STURGE WEBER UK
april 2013 “It’s not just a Birthmark” Charity No: 1016688
DEAR EVERYONE, Contents This year we are extending our Family weekend and we will be staying an extra 1 Dear Everyone night which will give us all more time to socialise. We are starting earlier on 2 My First Half Marathon Saturday with registration from 11.00am. 3 Tall Ships Since the last Family Weekend the online shop has been set up with the latest 4 Tour de Rye & Romney additions being the Sturge Weber Bear and the Single “More than Just My Little Marsh Girl” (the words written by Stephen, Angelina’s dad and the music arranged and 5 The Sweet Taste of Success performed by Warren Polydorou). Fundraising Strawberry Tea We now have over 300 members on our Sturge Weber UK Facebook page which is 6 very active. Give as you Live Twitter Since the last Newsletter Jayne came up with the idea of two bears “Beartrice” 7 From a Fathers Heart and “Beartie” who travel the world to raise awareness of Sturge Weber. They have 8 Family Weekend certainly travelled to some exotic places. They have their own Facebook and Twitter Conference page and Jayne has written about their holidays in this issue. 9 Christmas Fayre We hope you enjoy the stories and articles in this newsletter and I would like to Collection Boxes thank everyone who has contributed. 10 Annie 11 Recycle Your Old Printer We look forward to seeing you all again in October. Cartridges 12 Beartie & Beartrice Best wishes, 13 Christening Jenny Facebook 14 Family Fun Day In Memory 15 Golf Day Townswomen's Guild 16 Hallie's Story 17 Pre Christmas Party Keighley's Message About Kerrianne Can I tell youAbout Epilepsy 18 Identity and Passport The Next family weekend conference Service Peterborough 19 NHBC Golf Day will be spread over 3 days Personal Independence Payment 26th - 28th october 2013 20 Keppra Kid at the Hilton Hotel, Warwick 22 Major Series North 23 Runnerbean Tomcat Twisters 24 Sturge Weber Store 25 SW Summer UK Family Fun Day 26 Tash For Cash 27 Rachel's Skydive 28 Thank Yous Useful Contacts At times I really didn’t feel like going out to run, but I just My First Half Marathon kept reminding myself of a couple of things:-
- Hallies beautiful smiling face. Despite everything she has been through in her first year she seems to be rarely without a smile.
- Graham training at silly hours of the day.
and finally
- how thankful we should all be for our good health. I am a relatively healthy individual and I really have no excuse to sit on the sofa feeling sorry for myself.
Before I knew it the race week was upon me. I knew I could do the distance, it was just a matter of how long it would take. I woke up on the morning of Sunday 10th Feb, to sleet, snow and a temperature of -2. Conditions were far from ideal for a first half marathon. Once I started running I stopped noticing the cold, my spirits were lifted greatly by support from Cathy and Alistair Davidson (Hallies Grandparents ) who kept popping up at various points around the race. At 11 miles my legs really began to suffer from the cold. I finished the race in 2 hours and 15 minutes, I guess not bad for a first attempt , in what I have heard is the second toughest half marathon in the country.
I was inspired to run my first half marathon, by Graham Davidson (my husband’s cousin) who has signed up for a Half Iron Man event and was training hard. On reaching my 40th birthday ( so I guess a mid life crisis) I began to realise if Graham could make time to train for such a gruelling event, in amongst caring for his family and dealing with Hallie’s condition, I really had no excuse.
Four months ago I was asked to design a t shirt for the Liversedge Half Marathon. I came up with a design based on the route map, as I was drawing the route, it dawned on me, with a little hard work I could train to run the race. So I had my inspiration, a race to run and it only seemed right to try to raise money for Sturge Weber UK. Hopefully to help out families such as Graham and Rachael Davidson.
The preparations and training was pretty difficult since it ran through November to February. I had to fit training amongst Christmas festivities, ice, snow and dark evenings. It would seem that I was not the only one of Hallie’s relations running the race. Some half an hour ahead of me was Hallie’s other Grandad (David Needham) who some years my senior, finished the race in much less time.
I felt a real sense of pride finishing the race, but even more so completing the three month training programme. The icing on the cake is to have raised some money along the way (£491), which I hope will prove helpful to Sturge Weber UK in the future. It is now the turn of my husband (John Hughes) who similarly has been inspired by Graham and his family, to train for the Castles Triathlon in July. He will also be raising money through Just Giving.
Yvette Hughes
2 Sturge Weber Newsletter Tall Ships - Sailing Adventures for All
Lord Nelson Tenacious
Join JST Tall Ships and sail with the Jubilee JST subsidise the costs on every voyage to Sailing Trust (JST), a registered charity make their tall ship adventures as affordable that owns and operates Lord Nelson and and inclusive as possible. They also offer Tenacious. These are the only two tall ships in extra bursary funding and fundraising advice the world designed and built to enable people for those individuals who might struggle to of all physical abilities to sail side-by-side as afford the full voyage cost. equals. Since the charity started in 1978, over 36,000 Tall ship sailing holidays with the JST people have sailed with the Jubilee Sailing provides everyone the thrill and adventure of Trust. Over 24,000 of those have been on life at sea and you can be involved in almost Lord Nelson , which was launched in 1986 every activity on board. Take the helm, set and 12,000 have sailed on Tenacious which the sails and keep watch, all regardless of was launched in 2000 – the largest wooden your physical ability and previous sailing hulled tall ship of her type to be made since knowledge. the end of the 19th century.
http://www.jst.org.uk
3 Sturge Weber Newsletter and meet him at various watering points for a much needed gulp of water and encouragement. There were feeding points at Camber, Lydd and Old Romney where some riders Each year for the last who were doing the 25km ride turned back. At the Oasis 6 years the Rye and café the run split and the 100km riders proceeded towards Winchelsea Rotary Hythe. Neale, together with the 50km entries, made their Club organise a Fun way back to Rye via Appledore and the Canal Road. Mum, Run rather grandly Max, Brenda and I sat in the Autumn sun outside at a nice called the ‘Tour café in Appledore and waited to cheer the riders as they de Rye et Romney passed through on the final leg back to Rye. Marsh’. In September 2012 my brother The long distance riders included many seasoned cyclists Neale decided to take but they were supplemented by a few brave souls who part and very kindly were doing the 100K with little previous cycling and were chose Sturge Weber suffering badly when they eventually came in sight of Rye UK as his nominated as they approached on the Military Road. Neale had put in charity. a lot of training prior to the event and finished the 50km in good shape. Despite the weather forecast the day dawned bright and clear. A record entry of about 150 set off to get to Hythe Medals were given to every rider who completed the and back (100km/63 miles) and gain a commemorative course. Neale presented his medal to Max. medal. Neale selected the 50km distance and there were Many riders were sponsored, and thanks to the enormous shorter rides for the less fit and for younger riders. There generosity of Neale’s sponsors, he raised over £1500 for were lots of very young riders accompanied by parents Sturge Weber UK! Thank you very much to Neale and to or siblings and marshalled by volunteers. It was a very his sponsors! friendly, relaxed event. Antonia East Rye Town Crier, Rex Swain, set the ride in motion with his traditional cry of “When I ring the bell, go like hell!” Riders set off in groups at intervals between 9 and 10am and were soon wending their way towards Camber on the bicycle path. Riders came in all shapes and sizes, young and old, rich and poor. Me, Max, my mum and my aunt Brenda all piled into the car to follow Neale along his route
4 Sturge Weber Newsletter The sweet taste of success
On Saturday 13th October 2012, Jodie Brown, her dad Charlie and Jane Howard Set up a cake and card stall at Hertford Food Festival, to raise some money for Sturge Weber UK. Everything we raised, we got doubled by DHL. We were given a free stall by the events main sponsor Waitrose, and with cakes from friends and made by ourselves, we sold everything we had. Most the cakes were reasonably priced, but we still made a good profit. Some of the cakes were quite sweet too. Like the frog cakes! We also sold homemade biscuits, and there was a cake stand itself for sale! Our most popular cakes however were the plain iced ones - who doesn’t love them? Also on the day we sold Sturge Weber Christmas cards and had a guess the number of golf balls in the bottle. During the day we made £207.50 which was sent away to be matched through the D.H.L. Match-it programme, giving us a total of £415.00 in total raised for the day. Well done to everyone who baked or brought. Charlie Brown.
Fundraising We have been asked by a number of people for some ideas and tips on fundraising. Below are a few ideas, if you would like any more information you can email Lisa Massingham on [email protected]. We also have a fundraising pack available which Lisa can send anybody who would like one. Recycling ink cartridges and mobile phones http://www.recycle4charity.co.uk/intelsignup.aspx Sell old DVDs, CDs and even clothes at http://www.musicmagpie.co.uk/
Set up a personalised fundraising page at JustGiving http://www.justgiving.com/sturgeweber Or here at Virgin money Giving http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1006974 Shop online with thousands of stores and raise money for your favourite cause with every purchase - at no cost to you http://www.giveasyoulive.com/howitworks
Car Boot Sales http://www.carbootjunction.com/
Cash for Cans http://www.thinkcans.net/cash-cans/about-cash-cans#.UUsbiFctq8A
Strawberry Tea Members of Enfield North Trefoil Guild (a branch of Girl Guiding UK) chose Sturge Weber UK as their 2012 annual charity. They held a strawberry tea and a garden party organised by Jakie Barchou, Audrey Smith, Gwen Coaster, Marie Newton and Marianne Newberry, ably assisted by other members and their friends. Jane Howard and daughter Sarah were invited to their November meeting where Jane spoke about Sarah’s condition, the work of the Charity and how grateful she and her husband were, for all the help and support they had received from them. She was handed a cheque for £300. Edna Cole (Jane’s Grandmother).
5 Sturge Weber Newsletter Have you ever heard about Give as you Live? It’s a way of raising money for charity when you shop online. All the big retailers are signed up - and because it’s the stores who donate, it adds nothing to the price of the shopping.
Some of our members have already raised some money for STURGE WEBER UK, just doing their regular shopping online - and you can support us in the same way. You can raise extra funds for STURGE WEBER UK every time you shop online – all without putting your hand deeper into your pocket.
Give as you Live brings together thousands of leading stores, including John Lewis, Expedia and Tesco, who have all signed up to donate a percentage of every purchase you make online.
How to raise money for us every time you shop online: 1. Sign up - it takes seconds to get started and is 100% secure. 2. Install Give as you Live and shop directly with your favourite stores or via our shop. 3. Compare millions of products and thousands of stores so you can always get the best deal online while raising money for us. Get started: http://www.giveasyoulive.com/join/sturgeweberfoundationuk We look forward to hearing how you get on.
Twitter Social media such as Facebook and Twitter are not only ways to tell people how you are feeling or what you are doing; they are excellent methods of raising awareness and networking. It may seem confusing when you first join up but you soon get the hang of it. If you are concerned about security you can lock your tweets so that only people you allow to follow you can see them. Sturge Weber UK has two Twitter pages, one for Sturge Weber UK and one for Beartie and Beartrice’s travels. If you are already on Twitter please follow @SturgeWeberUK and @SWTeddiesUK, if you don’t already use Twitter please sign up to and help us spread the word. Your profile page. This is where you see This is what visitors see any Tweets ‘addressed’ Search box for finding to you specifically people on twitter
This is where you post your Click here for tweets and see any tweets from settings/direct messages etc people you are ‘following’
The green retweet symbol
What’s a tweet? A tweet is a 140 character message. That includes punctuation and emoticons. The only people likely to see a tweet are the people who follow you. At first, that may be no one or not many people. BUT it is important to note that unless you protect your tweets in your settings it still could be seen by anyone—if they go looking for it. To address a tweet to someone it MUST have the @ sign, without any spaces, before their username. Click on a tweet to see the options i.e. Reply, Retweet or Favourite. You can only delete tweet which you have written. A green triangle in the top right corner of a tweet means it has been retweeted and a yellow one means it has been marked as a favourite. #CT = Charity Tuesday where people recommend charities to follow #FF = Follow Friday where anybody can be recommended to follow The # (hash) makes anything following it into a link. E.G. #BearHugs . People can then click on that link and see all tweets with that hash tag. Don’t use spaces between words in hash tags. You can # anything! People can also send a personal message on Twitter; this is called a direct message or DM. How to sign up First you need to sign up either by going to Twitter.com or by downloading the Twitter app for your phone. There are other ways but going to the website is easiest. You’ll need to choose a unique user name that isn’t more than 15 characters. You’ll also be able to write a bio and choose an icon to identify you. But these are optional steps that you can do later.
6 Sturge Weber Newsletter Warren said “Angelina inspires From a Fathers Heart me every time I see her. She is Words became song and song became donations. always so happy and gets so excited when I go and visit and loves me singing and playing guitar to her. After reading Stephen’s poetic words about his little girl I immediately began transforming it into a song” Sturge Weber UK will benefit from 70% of the profits made on sale or download. Warren has requested that the money raised will be used towards an appeal fund for a multidisciplinary Sturge Weber clinic for anyone over the age of 16. Currently GOSH is the only children’s hospital in the UK that provides a Sturge Weber clinic. “More than just my little girl” was released on 18th Dec 2012 by North Norfolk Radio and hit the headlines in our local press on Christmas Eve. We have sold many copies and downloads since the release. We would like to thank the following companies for “More than just my little girl” is a moving tribute, written providing sponsorship and donating their services for the by Angelina’s father Stephen about his inspirational and production of the first 100 discs. brave little girl. The words were originally written as a poem by Stephen Mills and later transformed into song and performed by Warren Polydorou. Stephen said “Throughout her whole life Angelina has shown strength, courage and bravery, it was my little girl who inspired me to write the words. At times it is so very hard to deal with watching your child suffer and struggle in ways that other children don’t struggle. Angelina isn’t affected emotionally by her disabilities but I am at times, but when I see her so happy, independent and so full of life she gives me the strength to keep smiling” Warren Polydorou has known Angelina and her family for Photography for the cover by Andreas Yiasimi www.fouco. many years and suggested he could transform Stephen’s co.uk and http://www.andreaspictures.com words into a song. Album Cover designed and sponsored by Glen Carr of Warren, who danced and sang backing vocals for Sinitta Jetprint www.jetprint.co.uk and Chaka Khan, and even shared a tour bus with Kylie and Jason, started playing guitar at the age of 6 and Printed and sponsored by Cheverton Printers www. studied at the Lane Theatre Arts College in Epson. chevertonprinters.co.uk Warren left his career and moved back to his home town in Disc printing and Audio duplication – Audio Tree www. Norfolk a few years before his sister Debbie was diagnosed audiotree.co.uk with Cancer, but she later, sadly, passed away. Warren also Jewel Cases supplied by Anglian Internet lost his mum two years ago and told us “I turned towards music again to help me get through the bad times, I write a Web page design by Ben Clanford lot of songs as it helps to get my feelings out” We have sold over 115 downloads and over 90 hard copies have been sold. We would also like to say a very big thank you to Stephen, Angelina’s daddy for such sentimental words and an enormous thank you to Warren for using his time and talents to help a cause close to our hearts. £522.99 has been donated to Sturge Weber UK from song sales so far. To have a listen or purchase the single go to http://www. sturgeweber-store.org.uk/more-than-just-my-little-girl-cd- single Lisa
7 Sturge Weber Newsletter Sturge Weber Family Weekend Conference 26th to 28th October 2013
Dental Care and Music Therapy. Glaucoma and Eye Problems will be covered by Miss Maria Papadopoulos.
The children will be going to Cadbury World this year and there will be a crèche in the hotel, one for the small children and The next Family Weekend Conference will be a chill out room for the older ones who do not held at the Hilton Hotel Warwick On the 26th, wish to go to Cadbury World. 27th and 28th October 2013. This is the Half Term Weekend. Children who will be going on the trip to Cadbury World will have their lunch there as we The weekend will begin on the Saturday with have an allocated area in the dining room so that registration from 11am, followed by lunch. they can all eat together. The children staying Contact a Family and Changing Faces will be behind in the crèche at the hotel will have holding workshops in the afternoon. There will Sunday roast with their parents.
We have extended the weekend to include Sunday night giving families more time to socialise over dinner and a balloon race for the children on Monday morning and chill out time for the parents.
be a crèche for the younger children and they will be cared for by Safehands Mobile Crèche and the older children will attend a workshop run by Changing Faces. Saturday evening fun starts from 6.30pm with entertainment for the children and dinner at 7.30pm.
On Sunday Dr Sarah Aylett will talk about the Don’t forget to bring your swimming costumes as different kinds of Epilepsy, Dr Samira Syed will there is a swimming pool, sauna and steam room speak about the latest laser treatment and Klippel at the hotel. For the more energetic there is a well Trenaunay. Other subjects to be included will be equipped health club.
8 Sturge Weber Newsletter The Committee are looking forward to seeing you all again in October.
There is no charge for the children attending the weekend, but the cost of the whole weekend for the adults will be £100 per person or if you only want to stay for the one night it will be £60.
The booking forms will be sent out with the September Newsletter.
Christmas Fayre
Christmas 2012 was my 4 year old son’s first Christmas at his new school. Marlcliffe School have a big Christmas Fayre each year so I took the opportunity to ask the head teacher, Mrs Mann, if I could sell Christmas cards and Sturge Weber UK wristbands etc at the Fayre. Mrs. Mann kindly offered me a whole stall in the big hall at school so I set to work making Christmas cards and put together packets of sweets, a large teddy to raffle, stocked up with Sturge Weber UK wristbands and my lovely neighbour Hazel made a fantastic chocolate house for me to raffle. I made little wooden bead bracelets and wrapped up lots of the boys’ teddies (unbeknown to them!) for a big lucky dip! I also handed out lots of leaflets to everyone that passed my stall (my mum helped me attract customers!) I used the event as an opportunity to spread awareness as well as selling items and chatted to several people who were very interested in the charity. One very elderly gentleman came up to me and handed me a £5 note. He didn’t want to buy anything and didn’t want any information, he just said “is it for Sturge Weber syndrome?” and I said “yes it is!” He seemed to have a personal connection. We made £215 in the first hour. It was very crowded and busy and a great experience. Isaac my eldest (4) helped me with the raffle tickets and Hallie sat in her pram next to the stall looking pretty in her little Miss Christmas outfit. Hopefully we’ll be able to do the same again next Christmas. Rachael Davidson
9 Sturge Weber Newsletter had had some form of seizure in that she had been sick and Annie her body had gone limp and her eyes were rolling. I left work and took her to our doctors who told me that she had had an infantile convulsion and she must have a virus. I was told to give her Calpol and take her home. Slowly Annie regressed. She would not play or walk. By Sunday we were particularly worried about her and took her to A&E. She was limp and lifeless and we were transferred onto the ward. At around tea time she bounced back and was crawling under the cot after Joshua. I naively told the doctors we needed to be sent home as she had clearly recovered. We were told to wait an hour and we are so grateful we did. Within the hour Annie had her first focal seizure which lasted 15 minutes. We were immediately transferred onto the children’s ward and told to expect either a brain tumour, meningitis or encephalitis. Over the course of the next 10 days Annie suffered many treatments (MRI and EEGs etc), seizures and even had to suffer a lumber puncture. Her longest focal seizure lasted an hour and a half!. We were eventually discharged with no answer as to what had caused her illness. Between September and March of the following year we had various hospital appointments to no avail. I kept telling them that something was not right with Annie and From the minute we conceived Annie I knew that she they kept saying I needed to prove it. During this time was a girl. My pregnancy was completely different to my Annie had had various EEG’s and even a sleep deprived pregnancy with Joshua and I felt so sick the whole way EEG. Still we were given no answers. through. My blood pressure was raised from 6 weeks into the pregnancy and I was signed off work for a month. The Then in March 2011 Annie started to suffer with head blood pressure has never come down. At 20 weeks I went drops. Again I was at work and received a call to say for my scan and was not shocked that we were having a Annie was not right as she apparently kept nodding like a girl. dog. I immediately took Annie to A&E and was told she had epilepsy as, coincidentally, the results from Annie last By the time I was 32 weeks pregnant I was having EEG had landed on the Consultant’s desk that day and problems with my hips, as my pelvis split, that I had to these confirmed she had epilepsy and she was started on leave work and have bed rest. Then at 39 weeks and 5 medication. days I had an elective caesarean section and our beautiful daughter Annie was born. Now you may think that having Since that day in March 2011 Annie has not had a seizure a caesarean section delivery meant it was easy, but you free day. Her seizures developed thick and fast and were in would be mistaken, Annie being Annie would not let them many different forms. We tried many different drugs and get hold of her and I lost nearly two pints of blood in the nothing seemed to work. process. In June 2011 Annie was referred to a neurologist from Nathan on the other hand had nearly two hours of sheer Leeds who travelled every three months to our local fright as he waited for both me and Annie to return. hospital. I went to this appointment not expecting anything other than the usual “tell us Annie’s story”. So to be told Annie was a wonderful baby but always knew her own by the neurologist that he had reviewed Annie’s MRI from mind. I tried her at 6 weeks on formula but oh no she September 2010 and in his opinion Annie had Sturge Weber did not want it and would not take anything other than syndrome was an absolute shock. He immediately referred breast milk, until 14 months old. To be honest whilst this to Annie being a candidate for surgery and told us that he was hard as I had a newborn and an 18 month old, I soon would refer her to Leeds for this. realised this beautiful bundle of joy we now had held the cards and if we wanted her to do as we wanted we had to During the wait for our appointment with the neurologist, work hard to make her believe it was her choice. Annie had video telemetry and various MRI and MRV scans. Annie developed well up until 18 months old. She was always much smaller than her peers and I put this down It took until March 2012 to have our appointment with to her being a girl. Then when she was 18 months old our the neurologist in Leeds who apparently was the best of lives changed. the best. At this point Annie was on Keppra and was not compliant. We had the worst appointment of our lives in The first week of September 2010 on the Wednesday I was that Nathan spent the whole of the appointment chasing home with Annie and Joshua and noticed that she was a after her up the corridor and she screamed. bit under the weather. She kept walking into things and started being violently sick. As working life goes on I sent I on the other hand sat across from the Neurologist, who her to nursery the following day and had only been at informed me that from one look at Annie it was clear she work 10 minutes when they ran me in a panic to say Annie could not have Sturge Weber Syndrome as she did not have a port wine stain. I asked to look at her MRI and MRV
10 Sturge Weber Newsletter scans and for him to We opted for Surgery there and then and in September explain to me about 2012 Annie underwent 8 hours of surgery and had her left what was on Annie’s occipital lobe removed. Within 2 days she was walking up brain and why her the ward having only 5ml of Calpol to dull the pain. brain had shrunk, The first three weeks after surgery seemed like bliss with the response was far fewer seizures. Thereafter the seizures started to creep “I’m sorry I don’t back in. They are different now though. Annie is now have my card to six months post-surgery and on a bad day can have 40 access the computer”. seizures and on a good day about 15. Various Annie met with her surgeon 8 weeks after surgery and we correspondence were told that when the surgeon operated there were more passed and the vessels further round on her parietal lobe which he zapped! Saturday before We completely agree with the surgeons view in that he was we left for the last only prepared to remove the occipital lobe which had 95% Family Weekend we of the blood vessels in the hope that this would work rather received a letter to than operate once and take more than was needed and say on a further look leave Annie worse than she needs to be. at Annie’s scans she did have Sturge Weber syndrome and Annie was again a candidate for surgery. So whilst Annie is still having seizures every day, these are easier to manage than prior to surgery and the head During this time Annie had progressed to having up to 20 drops are now few and far between. She has grown and different types of seizures and was now having up to 140 developed lots since her surgery. Our choice to operate we seizures a day. Most of them where head drops, which believe was right, yes she has visual field defect but the knocked her clean off her feet, and often hurt her. bulk of blood vessels are now removed and can no longer In June 2012 we received a call on the Friday to say we cause the damage a stroke would have caused and the needed to be at the Leeds on the Monday. We attended seizures have reduced by 100 per day. the appointment and met with Annie’s surgeon and My opening gambit on my pregnancy may have seemed neurologist. We were told that Annie needed surgery and like a moan. I would live that life every day of the rest of that this would happen soon. my life instead of Annie going through any of what she I had spent a great deal of time researching Sturge Weber has gone through and will go through. The funny thing is syndrome. We were given a chance to try and stop the that I went through it for 9 months, Annie so far has gone blood vessels growing and to stop the atrophy (shrinking) through it for two and a half years and she has moaned far of Annie’s brain. less in that time than I did. She is an inspiration. At this point Annie was sleeping up to 22 hours a day and Marie Cavalier we felt like prisoners in our own home. As she woke, fitted and slept.
Recycle your old Printer Cartridges and Mobile Phones for Sturge Weber UK
I have set up Sturge Weber UK to become a recipient for donations on the recycle4charity.co.uk website when print cartridges are send to them. I work for a large company and when I send in the empty laser carts, they will donate up to £5 for each one to SWF UK. Please feel free to inbox me on Sturge Weber UK Facebook or email me jaynouk@ hotmail.com if you would like more info, posters and bags to pass on to your friends and companies who would also like to get involved.
Jayne Hall
11 Sturge Weber Newsletter beartrice and beartie travel the world for sturge weber uk
After such a long needed rest (and counting Airmiles), Beartrice visited Great Ormond Street with Sarah to see how laser treatment works and was lucky enough to have a bearhug with Peter Andre at a weekend away! Beartie’s first trip away took him to Las Vegas with Alex and his family and a sunbathing session on Malibu beach. On his return he took a trip around the sights of Liverpool. Next stop was a trip with Jenny, Roger and their grandsons, where Beartie visited the Calvert Centre on Exmoor and a visit to the zoo there, looking for the Exmoor Beast! As the snow came in to the UK, Beartie spent time with Angelina playing in the snow and even had his picture published on the Norfolk news website with Angelina’s snowman! A busy Beartie even helped at the recent committee meeting in London just before shaping up and meeting some wrestlers for a photo shoot! Beartie and Beartrice have over 200 fans on their page, but in the last week over 1000 people have looked in on them, this is great news as word spreads, awareness gets bigger! Beartie and Beartrice are two bears that are travelling the world to help raise money and awareness for Sturge Weber UK. They have their own facebook page sharing photos of their adventures. You can find them by typing Beartie & Beartrice travel the world for Sturge Weber UK. They can also be followed on Twitter by following: BeartieAndBeartrice Since starting off in September 2012, Beartrice has visited Borneo and Kuala Lumpar in Malaysia. Following there she spent time with Christina in the Wirral. With a busy lead up to Christmas, she had the pleasure of accompanying the Ide family in Plymouth and then on the surprise trip for their boys to Disneyland! A restful Christmas was spent in Poland with Liam decorating the Christmas tree and meeting Garry the Monkey!
So, if you are having a day trip away or going on holiday, why not take one of the bears with you and photograph them by a point of interest or landmark ? It doesn’t need to be exotic, so whether it’s on a donkey on Brighton Beach, a trip up the Eiffel Tower or at a Theme park, why not take a bear with you and help raise awareness for Sturge Weber too! The bears also have their own Just Giving Page for fundraising, so perhaps they could visit your workplace or school before they go on their trip to raise a few pennies. Each bear comes in their own pack with their own personal diaries, leaflets about Sturge Weber and contact cards for people interested in following them. If you are interested in taking a bear on their travels, please send them a message on their facebook page or email them at: [email protected] so they can book you into their holiday diaries!
12 Sturge Weber Newsletter hallie's Christening Hallie had her first seizure on 17 December 2012. We knew to expect them but thought perhaps she would start having them nearer to 12 months old. I was certainly not expecting them to happen just before Christmas! Hallie was admitted to Sheffield Children’s Hospital while she was still having the seizures. The twitches would start in her left foot, work their way up her left leg, then her whole body would start twitching to the left side, her left arm and hand would then start and this is how they finished after a few minutes. She would have a fit lasting a few minutes every 20 to 30 minutes. It took 5 days for the doctors to get the dosage at the right level to stop the seizures and thankfully, on Saturday 22 December, Hallie was allowed home just in time for her Christening which we had planned several months before to take place on Sunday 23 December. (I had asked the Neurologist at Sheffield Children’s Hospital if Hallie would be allowed out for an hour to attend her christening and he was not going to allow this if her seizures were still out of control). Sunday 23 December was a very special and emotional day for us all. We were reminded of how precious life is whilst Hallie was in hospital and how much we love and adore our beautiful daughter. The Reverend Rob Young at Wadsley Church spoke of Hallie’s very recent stay in hospital and briefly touched upon her syndrome and what we were experiencing as a family. He also very kindly informed the congregation that the collection during the service would go to Sturge Weber UK. I was very touched by this gesture. I was also overwhelmed by the response and after the collection the money was counted and the church congregation had donated a grand total of £175! It was a wonderful service and all our nearest and dearest were there. Hallie’s Godparents were my best friend of 17 years Nicole Wood and her partner Tim Gordon and Hallie’s Aunty Claire and Uncle Fraser (Graham’s brother). We had a hearty pie and peas Sunday lunch at the local pub and Hallie took it all in her stride. She wore a beautiful vintage gown with lace around the edges and later on she did a costume change and put her tartan party dress on! We all had a fantastic day including the star of the show, Hallie! She probably wondered what all the fuss was about. Rachael Davidson
The Sturge Weber UK Facebook page The Sturge Weber UK Facebook page is very popular. At the time of writing there are 316 members! It was started by accident because I was a novice at navigating around Facebook but it has proven to be a lucky accident. Requests to join come from people all around the world. However the main activity comes from people based in the UK. Every day there are several new posts and these vary from the serious concerns of parents about their children struggling with epilepsy and medical complications to light hearted posts about the successes and achievements of children, young people and adults living with Sturge Weber syndrome. I’m sure I’m not the only person to wish this had been around when my son was born. As recently as the early ‘noughties’ it took me a long time to make contact with other families with SWS, although I had it easy compared to other families with children born earlier. Now, with just a few clicks of the mouse or taps on the screen, there is a wealth of experience, support, tips and open ears and minds waiting for parents and carers needing to know about SWS and all it entails. We can share ideas, information and tips in an instant. However, awareness of this rare condition needs to be improved so that people with SW and their families get the support they need. Communication through Facebook is proving a valuable tool to raise awareness of Sturge Weber syndrome in general and amongst medical practitioners in particular. One member, Ashley Ide, designed a Halloween pumpkin and a Christmas bauble to represent Sturge Weber UK. These lovely designs were adopted by many members of the Facebook group as their profile picture. This helps to raise awareness amongst our Facebook friends and also shows a colourful ribbon of solidarity at the top of the page when we log on. Ashley has completed an Easter design now! Antonia East
12 Sturge Weber Newsletter 13 Sturge Weber Newsletter on the bouncy castle Family Fun Day or having your face painted. Around the gardens there were lots of activity tables including, jigsaws, colouring, and painting, cake decorating, even dancing and singing. Everyone was enjoying the sun when the guest star appeared, ‘Upsy Daisy’, who danced and played with the children and even had A family friend Lynn explained that she wanted to raise lots of pictures taken. some money for the charity and make people aware of This provided the parents with a break, at least for a short the disorder. She suggested organising a Family Fun Day time. during the summer holidays last year. The day was a success and Lynn raised £85. This was the The event was organised to first event she had organised for charity and she explained be held in a local pub, ‘The she felt like she would like to do it again sometime, but Jollies’ in Bootle, Liverpool most of all she was happy that she made people aware of on 30th July which has a Sturge Weber syndrome and how individuals’ are affected large secluded garden for by it. such events. The Tinsley family would like to say a big thank you to The day started at noon Lynn for her valued support towards the charity but most with a bbq and soft drinks of all for being a good friend. for the children. There was a choice of bouncing Jeanette Tinsley
In Memory We would like to remember our Sturge Weber members who have passed away in recent times. Harmeet and John Sidhu’s son Jaskiran. Sheila Mabbutt’s Uncle. Christine and Rob Winton’s daughter Theresa. Christine was the first contact for Sturge Weber before the Charity was set up in 1990. Ghislaine Douglas wife of Mike. Below is a poem written by Ghislaine for her daughters Reflecting Reactions
“Why don`t you look in the mirror, Mum?” Huge lump in my throat like a walnut. As with my head turned, I splat on face cream. My tears trickle - well hid from her view. “I don`t always like what I see - love” I answer Anna - to me still my baby - at seven. “For me beauty`s only a dream” What confidence in life - but for you? “But - I love you and like you a lot Mum, Minus make up with her I go shopping, you`re the best mum in the world to me, or just to face the brashness of town. it don`t matter your face is all red, Mum - She pokes her tongue out at a bigmouthed `cos you`re so nice and love me.” teenager, smiles sweetly at old ladies who frown. I ask “ Does it ever upset you?” “No, really, though school pals sometimes say We stand hand in hand in a long queue, nasty things “Is she yours?” people ask - encourage a chat. - So I tell `em its really not your fault” Yet eight years back - when heavily pregnant, (Is it true not all angels have wings?) many said - “No babies! - If I looked like that!” Ghislaine Douglas
14 Sturge Weber Newsletter 2nd Annual Sturge Weber Golf Day 22 July 2012
We held our second Sturge Weber UK Golf Day on Sunday 22 July 2012 the day was planned and run by David Brown (Charlie) I would like to thank everyone who played or helped on the day to make the day a great success. In particular I want to thank My Bosses at the D.H.L. depot I work at for paying for all the trophies and medals for the day. Thanks also to 24-7 and A.D.R. Network who both generously donated prizes for our raffle and auction on the day. Thanks to David Sharpe at The Goat Public House Hertford Heath for doing the lunch at a reduced price for us. Thanks also to my young daughter Jodie Who ran around all day taking pictures and then selling raffle tickets along with her sister Ruby. All these people helped us raise more money, meaning we had to take less out of what we raised on the day and that’s what really matters. We played the golf at Chadwell Springs Golf Club in Ware Hertfordshire, followed by lunch and Prize giving at The Goat Public House in Hertford Heath near Hertford. On the day we raised a wonderful £1005.00, which if I remember right, is over £300.00 more than we raised last year. I work for D.H.L. and they run a Scheme called Match-it where they will match some or all monies raised by its staff. By breaking down the amount we raised into three parts to get matched, the golf, raffle and auction we were able to get all the money matched giving a total raised for the Sturge Weber UK to a great £2010.00. Once again thanks to everyone who helped or played on the day. Without you there, there would be no golf day. Be sure there will be another later this year. Charlie Brown.
Townswomen’s Guild
Bush-Hill Park (EVE) Townswomen’s Guild members donate money raised by sales and garden parties to a different charity each year. Pat was in the last newsletter with her sales and Jubilee party. My Nanny Cole is the President of the Guild. They chose Sturge Weber UK as their 2012 charity raising £2000. They have very kindly voted to raise money for us for a second year. I have unfortunately been unable to visit them again recently for a photo but will make sure they are in the next issue.
Thank you for all their hard work.
Jane Howard.
15 Sturge Weber Newsletter symptoms of all kinds that hadn’t been explained to me in Hallie’s Story detail. I was thrown into a whirlpool of emotions. I can My baby girl Halette remember the biggest worry I had was one of Hallie getting Nicole was born severely bullied at school and being sad and unhappy with on 15 May 2012 her appearance. I was struggling to see the positives and weighing 6lb 1oz. cried a lot. The only thing that kept me going was my She came early at scrumptious little baby girl. She shone sunshine into my 35 weeks gestation dark moments and made them easier to cope with. after several stays I think it took me six weeks of crying on and off to get in hospital from 30 over the initial shock of Hallie having complications. I weeks, fearing she started to enjoy having a baby girl, dressing her up, even would come earlier. putting tiny hairclips in her mop of hair. I also found a I remember the Facebook support group called Sturge Weber UK. I never minutes following thought this support group would become such an integral Hallie’s birth. First, part of my life. I could ask as many questions as I liked relief it was fast!! and got instant answers from parents who had experienced Then, after Hallie’s what we were going through from around the world! I find initial cry she went immense comfort in this support group and I am always silent. The room humbled by the other members’ experiences of SWS and was quiet. I was shown my baby daughter briefly before what they go through. she was taken to a cot to be suctioned. I asked why her face was so purple. I was worried she had been starved Hallie’s neurologist had told me on our first appointment of oxygen. Amongst the confusion (from the fast and that Hallie most likely did not have SWS because she was unexpected delivery) I wasn’t really given a proper answer. not having seizures and her development was in line with The staff said it was congestion or a birthmark. I was very her age of 3 months confused and remained so until the second day of Hallie’s old. I pushed for birth when the neonatologist visited me in our room an MRI scan and in hospital to explain that Hallie had a port wine stain finally got one birthmark. He apologised for us not being told this when when Hallie was 5 she was born. I do not think anyone in the labour room months old. The wanted the responsibility of telling me this news. The MRI scan confirmed consultant also explained there was a rare syndrome called a birthmark on her Sturge Weber syndrome which obviously I had never heard brain. This news of. The consultant himself, a mature man of many years was not as shocking experience, admitted he knew very little and had referred to because we had his text books before coming to see me. already done 5 months research into My initial reaction was nothing. I felt nothing for this the syndrome and news and continued as normal caring for Hallie, as I did had expected Hallie for her older brothers when they were tiny. She received to have it due to the a few weeks phototherapy for her jaundice, so we had location of the port to stay in hospital quite a while for her to remain under wine stain on her the blue lights. After the first week of Hallie’s birth, face. once breastfeeding had been established and we had got through all the other discomforts and difficulties in those I don’t remember many dates over the last 9 months but I first few days after do remember 17 December 2012 as this was the day Hallie birth, I began to started having seizures. These seizures were very subtle research this Sturge and would start in her left foot, move up her leg, left side Weber syndrome, of her body and down her left arm ending with twitching the consultant had in her left hand. She had several seizures whilst in hospital scribbled down on but eventually these were under control and she was a scrap of paper for allowed home on 22 December for her Christening and of me (along with his course Christmas! She has not had a seizure since then. email address). The Hallie is still the sunshine in my life. She smiles all the minute I started time, when she wakes in the night, when she is poorly, typing things into even when her little brother steps on her! She brings joy Google, images of to everyone she meets and I am certain she will continue to birthmarks flashed do this as she grows up into a beautiful kind smiley young up on the screen, woman. images of elderly men with large To read more about Hallie please see Hallie’s Story on birthmarks covering Facebook. their face and Rachael Davidson
16 Sturge Weber Newsletter choice, and if they did Pre Christmas Party not have a charity of choice to donate to the UK Sturge Weber fund. Well … it seems they are quite a generous bunch. I know money has been given to other charities such as GOSH and of course £1900.00 was given to Sturge Weber. The party went very well with me shouting out taxi for 20 at 4am… only as a slight hint for people to leave. Helena being 10 did not I thought it nice to get a few old friends together for a pre come; she enjoyed some Christmas party. The only Saturday I could host the party peace and quiet with her mum. My eldest two did come pre Christmas fell on my birthday, as the weekend after was for the first part of the evening and left earlyish as Dad’s my son Alexander‘s 18th. parties are no longer cool to stay too long at, plus I wanted I asked friends not to buy me a present, and instead I to let my hair down a bit. asked them to donate money to a children’s charity of their John Gardiner
Keighley’s message about Kerrianne!
The girl on the right is my sister. She has Sturge Weber syndrome which is a rare disorder which causes her to have a Birthmark on her face. But just because she has a mark on her face doesn’t mean she isn’t human. She’s still a normal person and she’s the funniest person I know. I know I’m not the greatest sister in the world but I can’t explain how much I love that girl. People may stare, point, laugh and say things about her but I know that your words won’t ever bring me and my sister down. My sister is perfect in my eyes, nobody’s going to change that not now... Not ever. I’m so proud to see what she has become and I couldn’t ask for a better sister in the whole world! I love you Kerrianne Ward Keighley Ward
Can I Tell You About Epilepsy? A Guide for Friends, Family and Professionals.
Can I Tell You About Epilepsy? Price: £9.99 Author: Kate Lambert Publisher: Jessica Kingsley
Book description: Meet Ellie - a young girl with epilepsy. Ellie invites readers to learn about epilepsy from her perspective. She introduces us to some friends who help present the varying forms of epilepsy. Ellie and her friends help children to understand the obstacles that they face by telling them what it feels like to have epilepsy, how it affects them physically and emotionally, how epilepsy can be treated and how the condition is often misunderstood by people who do not know the facts. This illustrated book is full of useful information and will be an ideal introduction for children from the age of 7. It will also help parents, friends, and professionals to make sense of the condition in its varying forms and will be an excellent starting point for family and classroom discussions
http://www.hemihelp.org.uk/support_us/shop/can_i_tell_you_about_epilepsy
17 Sturge Weber Newsletter Identity and Passport Service Peterborough When I found out that Sturge Weber UK had been voted as charity of the year at the Identity and Passport Service Peterborough I was so happy! I think a lot of my colleagues were too. Everyone seemed so generous when it came to making donations. I think because they know Here is a breakdown of the money raised. The total of me well and although £1854.94 is the most amount of money ever raised in a around 50 out of the year for the Charity Committee. Isaac sure is popular! 450 staff have met Isaac, a lot know Feb - Raffle and coffee morning £347.35 about him. March - Easter raffle £163.00 The event we started off the year with in February was a April - Guess the baby weight £55.00 coffee morning and cake sale. We charged £1 for coffee Hot cross bun sale £16.83 and cake, which a lot of people had made and brought in OLYMPIC QUIZ £23.00 for us to sell. It lasted about two and a half hours and we Ciran stopping smoking £327.74 raised £244 by people putting into the collection box and May - plant sale £129.60 giving more than £1 for the coffee and cake. June - Cake sale £11.00 Throughout the year we had several raffles and quizzes. We Landmark quiz £6.00 also had a manager who quit smoking by getting Sponsors, July - Pop quiz £6.00 guess the baby weight of one of my friends who was due August - raffle £31.00 to have a baby, and one very kind manager who is a friend Oct - Plant sale £38.68 hand made a gorgeous quilt with lots of detail on to raise Great Eastern Run Justine Edwards £269.00 money in a raffle. Her daughter also handmade some pixie dolls that were popular. Nov - Counter collection box £75.83 Dec - Accessory sale £ 115.91 Handmade Quilt by Gloria raffle £194.00 Handmade Pixie doll raffle £45.00 Total £1854.94
Louise Stimpson
18 Sturge Weber Newsletter NHBC Golf Day raises £1130 for Sturge Weber UK
In 2012, Sturge Weber UK was chosen as one of the charities to receive a £1130 equal share of the total money raised at the annual NHBC South East golf day at the Kings Hill Golf Club in Kent. Steve Catt, South East Regional Director for the National House Building Council (NHBC), heard of the charity through his wife’s cousin, Debra Farran. Debra’s daughter, Melissa, was NHBC and the tournament was won by Shanly Homes born with the syndrome and Steve was very pleased to be Leatherhead, with Barratt Southern Counties coming able to use the golf day to raise awareness of Sturge Weber second and Croudace Homes third. UK and support it with the donation. Despite the variable weather on the day (yes, it even rains Balloons and leaflets for the charity were spread around in the south east sometimes), everybody involved enjoyed the raffle prize display and distributed amongst the tables the golf and the dinner and were very generous with their during the golf dinner after the tournament. Money was donations. Apart from the money raised, over seventy raised through match fees, the raffle, hole sponsorship and people left the event that day knowing more about Sturge a system of fines for golfing transgressions such as hitting Weber UK than they did when they arrived. trees or landing in bunkers. Eighteen teams of four players Steve Catt were entered by housebuilders registered with the
Personal Independence Payment
What is Personal Independence Payment • If there is a change in health or disabilities on or after 7th October 2013 then a new claim will be needed Personal Independence Payment (PIP) is the new benefit that is to replace Disability Living Allowance for disabled • A new claim is also needed if DLA is due to end or be people aged 16-64 from 8th April 2013. It is designed to reviewed on or after 7th October 2013 help disabled people live more independently, support those • All others in receipt of DLA will not be contacted until in the greatest need and help with the extra cost that come 2015 or later from living with a long term health condition. While applying for PIP, then DLA will be paid while the PIP is split into two parts, Daily Living and Mobility, each application is processed. If no application is made, then with two rates – standard and enhanced. As with DLA your DLA will stop. income or savings does not affect PIP nor is it taxable Young People Who will get Personal Independence Payment Children in receipt of DLA are not affected until they Entitlement to PIP is based in the effect a long-term health reach 16 when they become eligible for PIP. If they turn condition or disability has on your daily life. As with DLA 16 before 7th October 2013 then the same applies as those you have to fill in a form and provide supporting evidence over16. but most people will be asked to attend a face-to-face interview. If you are awarded PIP then it will be reviewed 65 years and over over time to make sure it’s still correct. People aged 65 years or over on or before 8th April 2013 Who will be Affected will not need to apply for PIP. Those aged 16-64 on 8th April 2013 even if they have an Anyone in receipt of Attendance Allowance will not be indefinite or lifetime award of DLA affected How will it be introduced To find out more about Personal Independence Payment, visit www.gov.uk/pip PIP will be introduced in stages over a number of years
19 Sturge Weber Newsletter Keppra Kid - A Trip To Tesburys:
In a far away land known as Pongland look at that boy in the wheelchair, ha ha, his face is purple and he lived a small boy called can’t walk or talk properly, ha ha ha”. Liam and there he This made the poor little boy cry because he felt so embarrassed stayed with his parents and now everybody was staring because of all the attention Toby in a house next to had caused. the Pozfield forrest. Liam had a colourful Back in Pozfield Liam was snoring peacefully in his cot, but as he bedroom with a big drifted away into a seizure Garry started to stir. boys cot to sleep in, Now that they where both in Seizure Land Garry shook Liam which he also shared awake because he could hear a boy crying in the distance and with all his cuddly although he could not speak perfectly, Liam understood the calls toys and amongst the for help. various animals was his favourite, Garry the As quick as flash he changed into his blue and white superhero Gorilla. outfit and placed his pulse laser gun into its holster and as he did this he became Keppra Kid. At the same time Garry grabbed his Liam was a special banana boomerang, which in the world of superheroes was called boy because he was a Banoomerang. They then joined hands and launched into the sky born with a very rare like a bolt of lightening with Keppra Kid leading the way. syndrome called Surge Weber and he would As the two heroes flew closer to Tesburys the moans for help grew need to take all kinds louder and when they where close enough Garry pulled back his of different medicines throughout the day to prevent him from arm and threw the Banoomerang as accurately as he could towards having seizures, but this was not the only reason why Liam was so the supermarket. With a ‘whoosh’ the banana shaped weapon shot special. towards the target and then circled back towards them leaving behind a forcefield that had frozen everybody inside Tesburys still. Some days he would have seizures and although this was Garry then stuck out his hairy hand and caught it. sometimes dangerous for him, for some it was not. “Good shot” said Keppra Kid. That is because during these times Liam would become a superhero called Keppra Kid, with amazing powers which could be used “Oo oo, thanks, ah ah” replied Garry. to educate ignorant people who upset disadvantaged children. As they landed outside the entrance Garry ran as fast as he could However, Keppra Kid did not battle these forces alone because through the doors, up the escalator and towards where the frozen Garry the Gorilla was his partner and would always be there to people gathered, whilst Liam hovered slowly behind. help. “Oo oo, here they are, It did not matter where in the universe these offences where being ah ah” called Garry committed because one of Keppra Kid’s many special powers was and when Keppra the ability to fly at mega high speeds. He would always take Garry Kid arrived they both with him, but to do this he would need to use his magnificent assessed the situation strength to hold onto the huge Gorilla’s big hairy hand so that quickly. they could whiz through the air together. This called for the pulse On the other side of Pongland in a city called Krakford lived the laser gun to be called Dongle family and they had a young boy called Toby. Despite his into action, so he drew perfect health he was extremely troublesome and he would do it from its holster and all the naughty things imaginable as well as never, ever, help his zapped the child in the mum. His room was a mess, he never put his toys away and as for wheelchair and as the laser hit him he suddenly jolted awake with meal times, well, what a disaster they would be. Toby would spit a puzzled look on his face. the food on the walls, throw it at his parents and if he was feeling really mischievous, he would put spaghetti up his nose and sniff “Hello, please don’t be scared because Garry and I are here to help so hard that he could pull it back out of his mouth and tie it into you” said Keppra Kid as he nodded towards the friendly Gorilla a knot. and then Garry asked what the child’s name was. Today Mrs Dongle was going to Tesburys with Toby to do the “Fred Wilks, who are you?” family shopping, and my oh my, she was dreading it because the “We are superheroes who help good boys like you” Keppra Kid said last time they went together he did a wee into the kiddies ‘pick with a calming smile. and mix’ bucket, which resulted in the family being asked to leave. This kind of behaviour upset Mrs Dongle because she tried her “How do you feel about swapping places with this naughty boy for hardest to raise Toby correctly, but because he was so naughty she a day?” they asked whilst pointing at Toby. Fred then nodded in could never even find the time to have the beautiful hairdo she agreement. had dreamed about for so long. So the pulse laser was pointed at Toby and he was also zapped. So Toby put on his red and white sweater and off they went and what a morning they had on the journey to Tesburys. Toby With everything now in place the superheroes left the building screamed the whole way, licked the car windows and constantly and prepared to fly home, but they had one more task to complete kicked the back of his mums seat. When they finally got into the before they could lift off. Once again Garry swung his arm and supermarket he immediately ran away, but eventually his mum released his Banoomerang and as it returned to his hairy hand the found him because he was laughing so hard and so loud she could forcefield vanished and Tesburys came back to life. hear him from the other side of the building. On the way back home Mrs Dongle was tired and so upset by When Mrs Donlge asked him what was so funny he replied “ha ha, Toby’s behaviour she chose not to speak to him. However, things
20 Sturge Weber Newsletter seemed a little bit different. For the first time in as long as she That night as Toby and Fred lay in their own bedrooms awake could remember Toby sat on the back seat quietly and actually they where both very sad, but both for different reasons. Toby had behaved. When they arrived at the family home and pulled into such a brilliant day doing all the things he wished he could do, he the drive way things got even more weird as Toby hopped out didn’t want to change back with Fred, but he knew he had to and of the car, opened the boot and lifted one of his mums shopping he also missed his mum and dad. bags. Mrs Dongle froze on the spot with her mouth wide open in shock. Fred was upset because he did not know if he would ever be returned to his own body and he now realised that he had wasted “Er er, um, are y, you ok?” she asked her son. so many opportunities to be a good boy for his parents, as well as the good health he previously had. “Yes I am fine, but I am very sorry for being naughty this morning” he replied. As the time hit midnight Keppra Kid and Garry were approaching Krakford in the clear night sky and as they grew closer the Well, with that Mrs Dongle’s Banoomerang was launched towards the Dongle family home. knees went all weak and With a whoosh, the house was now under the frozen spell of the she had to hold onto the car superheroes. door to prevent herself from falling over. Hovering over Toby’s bed, Keppra kid zapped him with his pulse laser gun, turning him back to his former self. Toby groaned For the Wilks family things as he slowly woke up and when his eyes opened he stared in were not running quite so amazement at the tiny boy floating above him with a gun and a smoothly because it was smile. What was even stranger to Toby was the big hairy gorilla now medicine time for Fred, stood in the corner with a freaky looking banana in his hand. and boy oh boy, did he hate his medicine. Now that Toby “I must be dreaming” Toby said as his face turned pale in shock. was trapped inside Fred’s body he tried to call out for “Nope, you are not dreaming, for today we have tried to teach help but it just came out you a lesson and if you have learned nothing we will send you as an unrecognised sound back and trap you in Fred’s body forever”. and the more he tried the “No, no, please. I promise that I will never be so cruel ever again. more he became frustrated Also, I swear that I will be a good boy for now on” Toby pleaded. as he started to realise that he could no longer speak “Well that is excellent, because we will know if you break your properly. So the medicine promise and you know what will happen then” Keppra Kid was sucked up into a syringe and then Mrs Wilks gently opened explained. his mouth and slowly squirted the liquid in. “ Be a good boy and “Oh oh ah ah” agreed Garry, and with that the two heroes perched swallow for mummy” she said and kissed him on the forehead, on the window sill and jumped into the night, never to be seen but this didn’t help at all because it was the worst thing he had again by Toby, or at least he hoped so. ever tasted, even worse than worms, and although he desperately wished to spit it out, he simply could not. On the way back, they needed to stop off at the Wilks home. Again, the house was Banoomeranged and then Fred was zapped It was now early afternoon and as Toby finished his lunch he with the pulse laser gun. stood up from the table and took his plate to the dishwasher, opened it up and placed it inside. “Hello Fred, we hope you had a nice day today? and with your help we can assure you that there is one less cruel, spoiled little “Mum is it ok if I go and tidy my bedroom?”. brat in this world. I know you can hear me because you have an “For ffffff, Erm yes of course” she replied in disbelief and with active brain and also have feelings just like the rest of us” and that she picked up the phone and called Mr Dongle. in return Fred smiled a crooked smile to say thank you to the superheroes for such a wonderful experience. “Honey, I think you need to come home, it’s Toby” she demanded. Needless to say, still to this day Toby is behaving really well and “What’s the problem, is he ok?” he replied and then she told him the Dongle family are very happy. They are even allowed to shop all about Toby’s sudden change in behaviour, but although Mr in Tesburys again, providing of course Toby continues not to wee Dongle was equally shocked, he could not get the day off work. in the kids ‘pick & mix’ buckets. Throughout the day Toby continued to behave well and do all Although Fred is progressing slowly, he is a very happy and the things that as Fred, he could not. He even exchanged his red contented little boy. He still has to take yucky medicines every sweatshirt for a blue one. When Mr Dongle returned home from day and needs laser surgery to make his skin colour better, but he work that afternoon Toby even took him his newspaper and his knows that his family love him for who he is and not for what he slippers. can do. Even despite the bad smells he makes from time to time. Later that evening they all sat together and watched TV together As Liam laid in his cot, he slowly drifted away into a seizure. in peaceful bliss and although Mr. & Mrs. Wilks looked at each other in amazement, they had not been so happy for a long time. “Oo oo, Keppra boy, wake up, ah ah” demanded Garry with a cheeky smile from ear to ear. Earlier that afternoon things had gone from bad to worse for Fred because today was the day he had to go to the skin doctor “What is it Garry?” he asked, not sure of what was making him for laser surgery. Now the purple skin that he laughed at in the look so mischievous. supermarket was not so funny anymore, because the treatment “Oo oo, do you know the one thing we forgot to do, ah ah?” asked hurt so much he silently cried to himself and wished that this Garry. would all stop. “No, what did we forget?” replied Keppra Kid. When it was over he knew deep inside that he would never criticise handicapped people about the way they looked or acted “Oo oo, Mrs Dongles new hair cut, ah ah” Garry reminded him, ever again. He also now realised that he should be extremely and off they went once again hand in hand and into the sky.... grateful for his health and use it to be a good boy and help others, Lee Nankivell especially his mum and dad.
21 Sturge Weber Newsletter Major Series North Before Christmas I attended a Parent and Carers Insiders Guide and came away empowered with the knowledge I was not taking time out for me. So I made it my New Year’s resolution to do this. With the support of Nathan, I started running twice a week and swimming once a week. When a good friend suggested that we take part in the Major Series North, if I am honest, I didn’t take much convincing, as she mentioned rolling around in mud with soldiers shouting at us, and, I was in. I then thought that this was a great opportunity to raise money for Sturge Weber UK, so I set up a Just Giving page and printed off some sponsorship forms and set to trying to drum up some sponsorship. I am staggered at the amount I have raised. The day of the race, we all trundled off to Bramham Park in Leeds. The warm up was hilarious having to team build with people you have never met before by making shapes of letters on the floor. Already covered in mud the race began.... We ran for a bit and then climbed a couple of hills, during which point I thought “oh this is not too bad!”. Then the first obstacle came which was crawling through iced water. With soaking trainers I continued running along to the next obstacle. This consisted of trying to get down a sheer drop and running back up the other side. I opted to slide down on my bottom and got there eventually!. The next obstacle certainly woke me up as we had to run through a river and crawl under a bridge and then come out the other side, run on a little and then the onslaught of obstacles began.... Army crawling under wire, through mud, running through bogs, during which I seemed to instantly collapse and was rescued by various men!!! We then had to negotiate our way
through a river which came up to our chests and continue on to more bog running, walking over tree stumps and climbing up hills which seemed like mountains. Nearing the end I had fallen into four bogs and two rivers and been rescued by strangers every time. Reaching the end I pushed forward and climbed a hill to the slide, which consisted of sheeting, which had water running down it and which you had to throw yourself down. I was really enjoying myself and then I landed face first into more mud. The end was in sight and as I climbed the last hill there was one more obstacle to climb through. I was not expecting to be shot at when I came out by soldiers with water guns, but by this point I was soaked to the bone and covered in mud!. All in all it was probably the most fun I have had in years. Whilst I have never been so cold, I laughed harder than I have in a long time and was taken aback with people’s kind spirits as I lay in muddy bogs unable to move! Not a bad way to raise £524 for our wonderful charity. Marie Cavalier
22 Sturge Weber Newsletter Thank You Sturge Weber UK for Helping Me Set a New PERSONAL BEST!!!!!!!
As a known runner amongst my friends, family & work colleagues I am often being approached to run for their favourite charity, but as soon as I found out our office nominated charity of the year was Sturge Weber UK I immediately offered to run our local half marathon) for the charity in honour of Isaac Stimpson (I work with his mum, Louise). The Peterborough Great Eastern Run Half Marathon (for those of you who don’t know it is 13.1 miles). Despite having completed a few half marathons in the past, I hasten to add that it is still very hard going, and miles upon miles, hour upon hour of training must go into the preparation. An example of my weekly training would be: Monday: Yoga. Tuesday: Rest Day Wednesday: 4-5 miles (fast run) Thursday: 4-5 miles (easier/slower run) Friday: Yoga. Saturday: 12miles (long endurance run) Sunday: 5-7miles (easy or fast run depending on how I feel by the end of the week) I also walk 5 miles a day. As you can tell I do enjoy being very active. Obviously this level of activity requires an awful lot of determination, self- motivation and self-discipline, so when the wind is howling and the ‘horizontal’ rain is tapping on your windows, knowing all your friends are having a lay-in, or are curled up on the sofa watching a favourite film, I’m still putting on my shorts and heading out for a run! I must be mental!! Running for a charity puts extra pressure on you because you want to do really well for the charity and don’t want to let them down. As a runner I am able to turn this pressure into a positive thing and despite the pain and agony endured during the long training runs, and even on race day, what kept me going was knowing at the end of the half marathon my pain and hurt will stop and I will receive a medal. But it doesn’t stop for those families who are affected by Sturge Weber and they will not get a medal, whereas they are the ones who deserve the medal, not me. So Thank You Isaac for helping me achieve a PB (a personal best) with a time of 1hour and 50mins. I am honoured to have run for such a small, little known but worthwhile charity and even though my donation was very small I certainly hope to have raised a little bit more awareness of Sturge Weber. Editor’s comment - The total raised was £1001.25 far more than her target Justine ‘Runnerbean’ Edwards :O)
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23 Sturge Weber Newsletter Sturge Weber UK Store Goes Live
We would like to invite you to have a browse through our new online shop www.sturgeweber-store.org.uk where we have a selection of great quality, charity branded products. All of our products are produced by companies who supply merchandise to some of the biggest charities and high street retailers in the world. We first introduced some products at the Family Weekend held in May 2012. The response from everyone was amazing and many products were purchased. Steve Waters, Callum’s father, approached the trustees of the charity during the weekend and offered to create an online shop for the charity to sell our branded goods. Steve is very busy running his own web design company, so spent much of his spare time creating our shop. All we had to do was provide Steve with good quality images of the goods and a description and size guide. Luckily, one of my family members, Joseph Millar, is a photographer and he took the photos for us as a favour. The shop finally went ‘live’ in mid December, just in time to get a few orders out for Christmas. It was a very exciting but very busy time for me! As well as providing good quality products, the shop helps raise funds and awareness of the charity and the syndrome, especially as anybody can find our shop and purchase goods. They do not have to be a member of the charity. All of the profits from all sales go directly to the charity. It is not our intention to make a profit on postage so delivery charges are calculated using the individual weight of the product and are kept as low as possible. The charity cannot thank Steve Waters www.itsecpc.co.uk enough for all his continuing hard work and time in developing and donating the shop to us. Massive thanks also to a very patient, Joseph Millar https://www.facebook.com/pages/Joseph-Millar- Photography for supplying all of the images to my exact standard as requested! To date we have sold over £1500 worth of products half of which is estimated to be profit for the charity. Thank you to everybody who has already purchased items from our shop and many thanks to all our fundraisers who have sold products on our behalf. The total amount of trolley tokens and wristbands sold is £865. Please share our website with your friends, families and colleagues. Lisa
24 Sturge Weber Newsletter Sturge Weber Summer UK Family Fun Day Saturday 08 June 2013
Rick and I would like to invite you all to the first Sturge Weber Family Fun Day. Our daughter Yasmin is 4 years old and has Sturge Weber syndrome. We have organised and arranged funding with the support of The Petty Pool Trust and their staff a social networking day. It is for children/adults with Sturge Weber Syndrome and their families. Enabling us all to socialise with each other, Mums, Dads and siblings included. Activities are for all to take part in, Mums and Dads included. It is going to be a fantastic occasion but the most exciting thing about it is that the whole day including events, food, activities and camping is TOTALLY FREE. The only cost implications are for those of you who wish to have a drink or have travelled some distance and want to stay over in the local Premier Inn, which is just a short walk from the event. www.booking.com/Premier-Inn-Northwich . Other places to stay locally are:- www.premier.com/en/hotel/NORPTI/northwich-south www.travellodge.co.uk/hotel/520/Northwich-Lostock-Gralam-hotel www.primahotels.co.uk/nunsmere/ The Sturge Weber UK Family Fun Day In the heart of Cheshire Petty Pool Outdoor Centre, Pool Lane, Sandiway, Northwich, Cheshire CW8 2DR
ITINERARY 12.30 – Arrival, Buffet lunch provided 14.00 - Activities for everyone - Archery, Zip Wire, Climbing Wall, Crate Stacks, Leap of Faith, High Ropes, Woodland Walks, Pets Corner will be open 16.30 - BBQ - Chicken Kebabs, Homemade Burgers, Sausages, Vegetarian Selection, Coleslaw, Salad, Potato Salad, Rice Salad, Tea, Coffee, Beer, Wine & Soft Drinks included.* *However this is limited so please feel free to bring your own tipples too! 18.30 - Move to campsite for campfire and toasted marshmallows.
Between the hours of 20.00 and 22.00 a local taxi will ferry back and forth to local hotels if required. Anyone wishing to camp at Petty Pool can do so but must provide your own tents etc. Toilets and shower facilities will be available.
I’m really excited for the Summer Fun day. Can’t wait to meet you all, it will be fab.
Don’t forget to pack your bags full of smiles and fun and we will sort the rest!
Please RSVP by Monday 20th May - with your name, contact details, number of people attending the fun day and special dietary requirements. Please indicate whether you want to camp.
To: Nicola Colenso, 11 Coronet Ave, Kingsmead, Northwich, Cheshire, CW9 8FX
EMAIL: [email protected] Mobile number:07759638729
24 Sturge Weber Newsletter 25 Sturge Weber Newsletter Tash for Cash
I decided to follow what seems to be a growing trend amongst the privileged cavemen last November and grew a moustache. This was a double edged sword to raise awareness for men’s health as Movember is intended, but also to raise funds for a charity close to my heart, Sturge Weber UK. I began growing my moustache at the displeasure of my wife Laura, who hated it. It was very irritating towards the end as all who have tried know, but for a worthy cause. I wanted to make a statement and raise awareness as much as I could and came up with the idea of dying my mo red. This had the reaction I intended with everyone asking why I had done it and providing opportunity to talk about Sturge Weber and birthmarks, as birthmarks tend to be noticed and people tend to look, stare and judge. I definitely did feel this walking around with a red mo but it aided immensely in raising awareness and £106 for the charity.
Ashley Ide
Collection boxes Collection boxes not only help to raise vital funds, they also create awareness of our important work. Your small change can make a big difference. Collection boxes at work: You could ask for permission to display a collection box in your work place or any local business within your area. Collection boxes at home: Did you know that as a country we have £345 million in loose change in our homes, down the back of our sofas and in our cars? Order a collection box today and put your pennies to good use. Collecting in public: If you are planning to collect on the street or any other public place, there are a number of guidelines that you need to follow. Please see our Fundraising guidelines (included in the pack) - keeping it safe and legal for further information. Submitting funds and returning your box: Once your box is full, sending in your donation is easy. You can either:- • make an online donation • send us a cheque • pay the donation into our bank All the information you need to do this is provided on the collection box remittance form. Please fill in the details required on the remittance form and send back to us so a letter of thanks can be sent. Many thanks to everyone who has raised money through our collection boxes and to all the businesses who have displayed them. To request a collection box please contact us:- Email: [email protected] Telephone: 01263 577570
26 Sturge Weber Newsletter Rachel’s Sky Dive My decision to sign up to do a sponsored skydive for Sturge Weber UK was a very difficult one, and at the same time, a very easy one. I did it for my Godson, Callum, who has Sturge Weber Syndrome, and I felt compelled to do something to raise awareness. I was aware that I was not going to raise any sponsorship money by offering to eat cake and my fears of heights and flying pointed me to a painful conclusion - Parachute plane and falling at a tremendous pace. I nearly burned jump! Danny’s ears off with a plethora of expletives before I calmed down enough to merely scream instead as we My friends and I quickly rallied round local businesses hurtled towards the earth for the longest 45 seconds ever and gained some sponsorship, as well as donations from recorded. Then Danny pulled the ripcord and as we quickly friends, family and colleagues who all generously gave slowed down, I realised that the view was absolutely what they could. (Special thanks to Padworth Vehicle breathtaking, as it was a gorgeous sunny day and there was Recycling at Aldermaston, BJH Properties of Newbury and barely a cloud in the sky. Danny showed me how to steer Buildbase Newbury for their generous sponsorship too). the chute and spin around, and I started to enjoy myself, as The day I had been dreading came by so quickly, and before I knew it, I was heading over to Netheravon to meet my doom. I met with my instructor, Danny, who turned out to be a Red Devil, which eased my fears a little and he gave me sound advice about what lay ahead. I then had what seemed to be the longest wait of my life before I was called in to change into the skydiving kit and board the plane. I waved goodbye to my friends and family who had turned out to cheer me on and boarded the plane which took off about 5 minutes later. As I was attempting a tandem skydive, I was to be the last off the plane, diving from around 8,000 feet and I waited with a knot of anxiety in my stomach as I watched the single divers piling out of the plane. Danny kept talking to me to keep me calm (no mean feat at this stage!) but the fear of a premature death began to ebb away. Having he also got my ponytail said that, my friends below could apparently hear me caught in his zip, so screaming (only me) from 3000ft up! trying to wrestle that out distracted me for a few We performed a perfect landing, (dignity intact), and I minutes. When it was began to walk back toward my family and friends who our turn, we shuffled were all cheering and clapping. I couldn’t believe I had over to the door and actually done it. waited for the go. At All told, I raised £941 on Justgiving, as well as £395 in the very last minute, we cheques from local businesses. I was terrified, but I am were forced by technical very proud to have done the jump, as it really was my problems to go back in, worst fears realised, and I would do it again. (And not just as our parachute had to because of Danny, who I am a little bit in love with now, be re-packed. That was for saving my life!) I hope my story inspires others to terrifying and I thought achieve tremendous feats! that was the moment that I was going to faint! We circled back around, and Rachel Flynn. then we were out of the
27 Sturge Weber Newsletter THANK YOU’s As well as individual articles of fund raising events we would like to thank everyone listed below for their kind donations. We apologise if we have missed anyone. We would be grateful if you are organising an event for any few words you could send us and even better if you have any photos.
S W C G Monthly Direct Debit Paul Slack and Clare’s Marathon Challenges Justine (Runner Bean) Great Eastern Run Streatham Vale Lodge Donation Nicola Colenso’s friend SW Key rings on the table as East Surrey Master’s Lodge Alms Collection and Raffle Wedding Favour November & February Marie Cavalier Major Series North The Essex trust, Exeter Donation Pinhoe Post Office Staff Donations Terry Brown Collecting Tin and work colleague Jodie Brown, her dad donation. Charlie and Jane Howard Cake and Card stall at Hertford Peterborough Passport Office Charity of the Year Food Festival Steven Askew South Bucks 10K Marathon David Brown (Charlie) Golf Day VolkerWessels Ltd- Jayne Hall Recycle 4 Charity printer cartridges Rachel Flynn Sponsored Skydive Alison Beasey Offley Parish Council litter pick Ashley Ide ‘Tash for Cash Anne Hopwood & Vin Fawley Donation Neale East, Rye and NHBC – Steve Catt Charity Golf Day Winchelsea Rotary Club “Tour de Rye et Romney Marsh” fun run Roz & Bob Mason Donation Yvette Hughes Half Marathon John Gardiner pre Christmas (birthday) Party Brian Barfoot Donation instead of birthday gifts Bush-Hill Park (EVE) Ex-CID Officers Association Donation in Memory of George Gadsby Townswomens Guild members Sales and Garden Parties Mike McAdam Donation in Memory of George Gadsby Enfield North Trefoil Guild West Wycombe Lodge Various functions held (a branch of Girl Guiding UK.) Strawberry Tea and Garden Party Isabel Smith Donation Rachael Davidson Stall at Marlcliffe School Christmas Fayre Burns school of Black Belts Jewellery/handbag sale, Awards eve, Deborah Morris’ friend Lindy who held a Fun Day 40th Birthday Debra Farran Sweet Raffle held at her salon DHL David Brown Employer fundraising match scheme Rye & District Lions Club Donation Warren Polydorou Donation from Charity single Tyneside Club, Sheringham Collecting Tin “more than just my little girl” Paula Harman Collecting Tin David Furness Donation Jeanette Tinsley Collecting Tin Amy Boudewijin Donation in lieu of work carried out Christine Priestley Collecting Tin by John Sutton. Antonia East Collecting Tin Hallie Davidson’s Samantha Barnes Donation Christening Wadsley Church congregation’s collection Express News, Cromer Collecting Tin USEFUL CONTACTS Chairperson Treasurer Secretary Fundraising Development Committee Jenny Denham Sarah Impey Paula Harman Co-ordinator Information Officer Member 348 Pinhoe Road 144 Pine Gardens 441 Mile Oak Road, Lisa Massingham, Lynn Buchanan Gillian Walsh Exeter Eastcote, Ruislip Portslade, Brighton, 2 Castle Close, 53 Brookland Road West, 208 Willow Avenue, Devon EX4 8AF Middlesex HA4 9TH East Sussex BN41 2RE Gresham, Old Swan, Edgbaston, Te l: 01392 464675 Te l: 0208 866 5379 Te l. 01273 271722 Norfolk NR11 8RH Liverpool LI3 3BG Birmingham B17 8HH [email protected] [email protected] [email protected] Te l: 01263 577570 Te l. 0151 228 0443 Te l. 0121 246 5777 [email protected] [email protected]
Family Contacts
Sue Wadwell Louise Stimpson 34 Barnes Wallis Way 50 Barbers Hill, Marske by the Sea Werrington, Peterborough Cleveland TS11 6NA Cambridgeshire PE4 5ED Te l: 01642 488850 Te l: 0779 311 0222
Visit our web Site www.sturgeweber.org.uk Keeping our records up to date - If any names or addresses are incorrect for those who receive our newsletter please let us know by sending us your new details. Please note that the views expressed in this newsletter are not necessarily the views of Sturge Weber UK.
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