Sturge Weber UK NEWSLETTER March 2018

Dear Everyone Contents It’s hard to believe that it’s been almost eighteen 1 Dear Everyone months since our last Family Weekend Conference. 2 1st Wormley Rainbows Visual Aids The next one will be held on the May Day Weekend, 3 Sturge Weber Awareness Day the 5th, 6th and 7th of May. Because it has been T-Shirts so popular, we have decided again to extend the Collection Boxes weekend until Monday teatime on the 7th May. 4 Calling all supporters of Sturge Weber UK! 5 Ability Dogs 4 Young People Again we will be holding a balloon race on the Monday 6-7 Sam’s Trip to Axiobionics morning as we know the children and adults look 8 Great North Run forward to this. Let’s hope the balloons reach another 9 SWS Party @ Petty Pool 2018 country this year. Reduced Water Rates 10 Sturge Weber Online Store More details about the weekend can be found 11 Christmas Stall for Sturge Weber UK inside this issue. 12-13 Scottish Day 24th September 2017 14 Disabled Facilities Grants Overview I would like to thank everyone who have contributed Medical Records and Scans/x-rays articles, stories and have written about their 15 HMRC fundraiser fundraising events for this newsletter. Many thanks Recycle For to Ally Phayer who has written about Sam’s Trip 16-19 Sturge Weber UK Family to Axiobionics in America and the BioSleeve that Weekend Conference stimulates the muscles in his arm, and to Hazell and 20-21 Amelie’s Story John Sutton for writing about “Ability Dogs 4 Young 22 Amelie’s Christmas Fundraiser People” and “Red” the dog they now have for their 23 Fundraising son Fred. John has also written about the “Visual Aid” Blank Card that Fred is now finding a great help with his reading. 24 What’s that on your face? 25 Sturge Weber UK Facebook and Twitter Thank you to Ally, Hazell and John for sharing this so 26 SWS mummies respite weekend others will know what is available for their children. 27 Direct Payments I hope you all enjoy reading it. Welcome to Holland 28 Benefits & Council Tax We are looking forward to 29 Calendar 2018 seeing you all again in May. 30 We Need Your Help Sturge Weber Secretary Position Best wishes, Jenny Wonder UK Family 31 Ketogenic Diet Weekend 32 Thank Yous Conference 5th, 6th and 7th May 2018 1st Wormley Rainbows

In January I attended Sarah’s Once they have decided what Rainbow group. They are working they are going to do I will follow towards their charity . We up with another article in the next talked about what charities do and newsletter. To finish off the evening how they can help us in different we had story time and I read Ashley ways. I explained about how Sturge Ides book ‘What’s that on your Weber UK had supported us. They face?’, which sparked some great spent time looking through all the conversations about how we are all old newsletters and played spot different and unique. Sarah in them! We talked about all Well done rainbows you have made the different ways that they could a great start towards your badge. raise money for charities.

They have chosen to spend this Jane Howard term raising money for our charity, which we are very grateful for.

Visual Aids

Fred (11) has bilateral glaucoma and has been on various eye drops since birth and in the last few years has had Baerveldt implant operations on both eyes. In addition he has secondary eye conditions in his left eye, which are ptosis (drooping eyelid) and an upward divergent squint which because they are opposing, greatly reduce his visual field. In addition to this, recent visual field tests seem to indicate that visual field loss in both eyes are far greater than anticipated. However there are several clues fee, free thereafter, for people with sight loss, dyslexia or in lack of awareness on his left and having to hold items disability and have a range of books for all ages. up to his right to look at detail. With the exception of the audio books, above vision Fred’s interest is history and often history books have aids cost a pretty penny although I understand various very small print so he was a reluctant reader, very keen charities can assist in purchase, in our case the school on being read to though. School assessment had shown have offered to buy one. EBay and the like also turn up black on yellow large font was easiest for Fred to read. gems as, how can I delicately put this, most vision aid users seem to have age related conditions. Our local society for the blind, www.iwsb.org.uk , have open days where suppliers of visual aids hawk their School will be getting a handheld reader (Enhanced wares, so we went along with Fred’s teacher to take a Vision’s Pebble HD) for Fred, but as it happens I took look, with I think, Fred being the youngest there by 50 a punt on an EBay bargain just before the open day. years! This was on a laptop sized video magnifier (Freedom Scientific Topaz phd Portable Video Magnifier) where We took a look at a few suppliers, each doing something books could be placed under and part pages read. It has slightly different and I’ll list them in case reading this you the advantage of variable magnification and high contrast want to investigate them: colour modes. The equipment new is many thousands 1. Dolphin SuperNova magnification, speech and screen however we managed to get a nearly new unused one for reader software used on any windows based device plus a significant discount; although still a lot of money for a a specialist keyboard for people with sight loss. punt, I believe the seller was extremely kind following my “make an offer” enquiry. 2. Enhanced Vision who supply handheld and desk based video magnifiers. Already using the video magnifier seems to have made a difference at school; thankfully. 3. A charity “Young Calibre Audio Library” provide an audio books by post service for a very low one off joining John Sutton

2 Sturge Weber Fundraising Awareness Day T-Shirts November 1st 2017 We have recently designed t shirts to be worn We would like to thank everyone who at fundraising events and marathons etc. supported us and shared our Awareness Day Candle on the 1st November, the Here is a photo of Kelly and Natalie wearing day that Dr William Allen Sturge was them with our logo on the back, when they born in 1850. It was shared 150 times took part in the Great North Swim. and reached 8,941 people. We try and add posts of interest on our Awareness If you would like one for your next event, Day Facebook page and our Twitter please contact Lisa, our Fundraising Co- pages several times a week, as our aim is ordinator. to raise awareness of this syndrome so that every child has a diagnosis, ideally You can e mail her [email protected] from birth and receives the appropriate medical treatment. or contact her by phone 01263 577570 We chose the date on which Dr. William Allen Sturge was born because he was the doctor who first discovered the syndrome. Dr. Sturge was the personal physician of Queen Victoria. He died in March 1919. If you have a Facebook page please visit the Charity’s Facebook Awareness Day page: facebook.com/ SturgeWeberAware and ask your friends to LIKE and SHARE the page too. Also pay a visit to the dedicated website: sturgeweberawarenessday.org Please follow us on twitter: @swcharitiesad

£345 million in loose change in our All the information you need to do Collection homes, down the back of our sofas this is provided on the collection box and in our cars? a collection remittance form. Please fill in the box today and put your pennies to details required on the remittance Boxes good use. form and send back to us so a letter of thanks can be sent. Earlier this year we re-designed the Collecting in public: If you are label for our collecting tins as we had planning to collect on the street or Many thanks to everyone who has changed our name to Sturge Weber any other public place, there are a raised money through our collection UK, dropping the “”. number of guidelines that you need boxes and to all the businesses who Paul from Express Printing kindly to follow. have displayed them. To request a donated the cost of the production collection box please contact us:- of the new labels. Please see our Fundraising guidelines (included in the pack) - Email: [email protected] Collection boxes not only help to keeping it safe and legal for further Telephone: 07706 951188 raise vital funds, they also create information. awareness of our important work. Your small change can make a big Submitting funds and returning your difference. box: Once your box is full, sending in your is easy. You can Collection boxes at work: You could either:- ask for permission to display a collection box in your work place or • make an online donation any local business within your area. • send us a cheque • pay the donation into our bank Collection boxes at home: Did you know that as a country we have

3 Calling all supporters of Sturge Weber UK! Calling all supporters of Sturge Weber UK!

Hardly are the summer holidays behind us and we start thinking about Christmas. Your Christmas shopping for presents and treats for friends and family can help Sturge Weber UK. SW UK is registered with Payroll Giving, Give as you Live, PayPal Giving, easyfundraising and Recycle4Charity. Please take a moment to find Sturge Weber UK on these websites and follow their guidance on giving:

Payroll Giving: www.payrollgiving.co.uk/ It’s cheaper because its tax free ‐ for example, a donation of £5 per month costs the basic rate tax payer £4.00 (the taxman pays the rest!)

www.giveasyoulive.com/join/sturgeweberuk Raise free funds for charity, just by shopping online! Sign up and support any UK charity, shop as normal at over 4,200 stores, they donate to SW UK ‐ for free! For example, Amazon donates up to 1.5% of the purchase value. M&S, Expedia, eBay, Boots and John Lewis are just a few of the 4,200 retailers signed up to the scheme.

www.paypal.com/gb/givingfund/ You find charities through PayPal, eBay and more. Add to your purchases, donate a percentage of sales or give in other ways.

www.easyfundraising.org.uk

www.recycle4charity.co.uk Recycle your inkjet cartridges and mobile phones to raise money for Sturge Weber UK and protect the environment. It’s so easy, you just need to select Sturge Weber UK and register online. You can order freepost bags to return your items in, or even arrange for a box of wanted items to be collected, free of charge! You can even monitor your account to see how much you’ve raised and each quarter an automatic payment will be made to Sturge Weber UK.

In the name of Sturge Weber UK and the people we support: THANK YOU!

4 Ability Dogs 4 Young People

Ability Dogs 4 Young People, Slowly but surely we are learning juggle Fred’s and Red’s needs all at abilitydogs4yp.org.uk is a local how to respond to and train our the same time. charity that trains assistance dogs puppy, Red, so that he will hopefully So, the pro’s, it has had a much wider to enhance the independence of become a useful non-judgemental impact on the family than we first disabled young people and children four-legged friend for Fred. thought, enticing one of Fred’s older to help with physical and mental Although it is most definitely work brothers (Eric, 18) out of his room disabilities, including cerebral palsy, in progress, we can already see the and has had an amazing impact on autism and epilepsy. future potential that having Red his confidence and socialising; he could have on his, Fred’s, well-being. By having a jacketed Ability Dog by has taken charge of training and The name was a working title based their side, increased general social there’s a real bromance! It has on his colour however; it has interaction helps disabled young given distraction at difficult times now stuck causing some confusion people’s well-being, confidence between Fred and his younger at times! and self-esteem, enabling them to brother, Wilf and although early go on to further education or gain Since Red’s arrival, after 5 boys, it days an encouragement to get Fred employment without needing full- is like having another toddler in the out of the house for walks, as lack time carers. house (7 months old); always up to of exercise has been an issue. In the mischief if not entertained, always long term we are hoping that Red Our son, Fred (aged 11), has bilateral on the hunt for food, despite being will be a comforting companion Sturge Weber with not quite fed and still having the occasional for Fred as he passes through his controlled seizures and blood flow accident if over excited. It is most teenage years (Fred has in the issues, bilateral port wine stain definitely something that needs past had treatment for early onset and bilateral glaucoma, together thinking through thoroughly before puberty) and if training goes well with atypical autism. After much deciding to invest the time and can give him more freedom and consideration as a non-dog owning money; we have visited the vets independence as he grows. family we have embarked on more often than most I am sure training our own puppy, a pedigree The con’s, lots of hard work, eyes for the most ridiculous incidents; fox red Labrador, to help Fred with in the back of your head, the sound chewing glaucoma drop bottle (a the assistance of by Ability Dogs of gnawing on a bone can be the sure-fire way to sedate your dog!), 4 Young People. The other option last straw to a stressed Dad and be eating the wrong end of a stick was to wait for a trained puppy to prepared for moments when you and eating a caterpillar. It can be become available; the charity owned question your sanity….. exhausting and at times the last service dogs are with the young straw when, yet another item has person from age 2 and then retired Hazell and John Sutton been chewed up or you are trying to at aged 10.

5 Sam’s Trip to Axiobionics

Some of you will remember Sam’s has a good amount of strength in who have had a Hemispherectomy. story from the previous issue. his left arm, he can weight bear on Axiobionics make bespoke wearable Sam was diagnosed at 9 months it, and good shoulder and elbow therapy for children and adults old with Sturge Weber Syndrome, movement, his left hand has been with a range of conditions. One Type 3 (without a birthmark or completely unused since surgery. item in particular interested me, glaucoma), after prolonged seizures. He was aware of its existence if a BioSleeve, that stimulates the Over the next few months his prompted and shown, but overall muscles in the arm to help reduce condition deteriorated rapidly and there was a complete neglect of that tone and raise awareness of the the decision was made at Great arm and hand. arm. I was incredibly interested Ormond Street Hospital, by Dr in how this could help Sam and We heard about Axiobionics Aylett and the Neurosurgeons that initiated contact with Philip, the through other families in America he needed to undergo a right-sided owner of Axiobionics. Hemisphectomy urgently. Sam had The sleeve is made with electrode the surgery done 2 weeks later, pads built in that attach to a on 19th April 2017 and has been battery operated electrical seizure free since. However, as system. This continuously sends expected he now has severe left signals to the muscles in the arm, sided Hemiplegia and Hemaniopia stimulating movement so that (loss of left peripheral vision). the arm is straightened; the hand It has been emotional and amazing is stimulated to open, increasing to watch how Sam has recovered range of movement. Now, for us, from the surgery. He swiftly learnt Sam needed something to connect how to do the traditional crawl that arm and its existence back to again, something I never expected his brain. After looking into it, my to see, and has now started to walk! husband and I made the decision to He doesn’t have any orthotics or self-fund a BioSleeve and travel to any aids to help him at the moment, Ann Arbor, Michigan to have one although we are monitoring his foot fitted for Sam. roll and progress. Although Sam

6 after increased use, I noticed when what he is doing. When he is not it came off he would pull at his left wearing the sleeve, he continues arm a lot more. His awareness of to show increased awareness of its it had definitely increased and he existence. For us it is still early days would bring it round into his field with the BioSleeve, but what I have of vision, whereas before he would seen has made the trip more than never have done this of his own worth it and I am so pleased that accord. We stayed in Michigan for something like this is available. They 6 days and we flew home with our can be made for arms and legs and BioSleeve just before Christmas help a range of different conditions, and have continued our sessions at the idea being that your body is home. being given continuous therapy, instead of an hour here or there. The sleeve is suitable to wear for up The stories from other patients have to 12 hours a day, but for Sam we been great to read and some are do only a few hours each day as he available to read on their website. is only 1. The sleeve has definitely improved his tone, in fact when Sam continues to progress well he didn’t wear it for a little while since surgery, he is now weaning over the Christmas period, I could off his last two seizure drugs and see it stiffening slightly but with getting better with his walking and In fact, we left 4 weeks later, I took a session wearing the sleeve this development everyday. We will Sam by myself and we flew out of lessened again. We now do at home keep everyone posted with how he Heathrow to Detroit. We arrived on therapy sessions where he wears gets on and his progress with the the Saturday evening and were due the sleeve and he actively interacts BioSleeve! at Axiobionics on the Monday so with that side, trying to place things had a while to settle in and recover in that hand and including it in Ally Phayer from the journey. We stayed about a 15-minute away and I rented a car out there.

The first visit to Axiobionics was to try on the BioSleeve that had been made for Sam in advance. We had a FaceTime consultation with Philip beforehand and went through his measurements so they could make it up before we arrived. Sam wore the sleeve for an hour the first time and I watched in fascination as his hand opened and closed through the stimulation from the sleeve’s electrical pads. I felt the current on the sleeve before he put it on and it was a bit of a shock, an incredibly strong electrical tingle. The only thing I can liken it to is a TENs machine, but much stronger. As Sam has such reduced feeling in his left arm, the tingle didn’t bother him in the slightest and he continued playing happily. Over the next few days the amount of time he wore the device increased to test his tolerance. He was never bothered by the sleeve at all, and

7 us knowing so many people have made donations. There were bands Great North Run on route playing music and children giving you ‘high fives’, conversations I was, as a midwife, in the extremely then suggested trying to secure were had with complete strangers. privileged position to deliver a place at the Great North Run, Drinks were given out at various my gorgeous grandson, Lincon a half marathon!! Place secured, locations and generous people were Soul Freeman, born on the 16th I then thought what a fantastic handing out sweets and oranges. March 2010. As soon as I saw opportunity to raise funds for Sturge Toilets were supplied throughout Lincon had an extensive birth Weber UK. The following months the journey but I was able to ‘jog mark on the right side of his face endured many days of hard training on’ without stopping! Eight miles in I knew potentially that it could but I was motivated by the fantastic I had to slow down due to painful be indicative of a more serious donations that were made. blisters I’d accumulated. Seeing condition. It became apparent the 11 mile then 12 mile marker The morning of the marathon we that the medical profession was a fantastic sight! The last mile left home at 04.30 to make our way had little if any knowledge of was along the coast line, ‘up north’ heading Sturge Weber Syndrome! Once the scenery and crowds towards Newcastle diagnosed we began the journey cheering gave you that (about 3 and a half of multiple hospital appointments, last splurge of energy hours). Arriving at scans, medication, infections and and I was able to sprint the hotel I tried to operations. But, that being said to the finish. 13.2 miles have some breakfast we are blessed with an intelligent, how fantastic I felt. but was too nervous strong, handsome, witty, remarkable Completed in 03:06:58! and excited and young man who makes us proud and raised £565.00 spent most of the every single day. (with gift aid donations time going for a wee!! still to come). Then I From the outset we as a family We then followed the needed a pint of beer! have raised money for Great thousands of people Ormand Street Hospital and Sturge through the street I have entered the Weber UK via means of raffles and towards the start, Great North Run again this sponsored walks. However, reaching what a fantastic atmosphere!! My year and I’m awaiting to hear if I’ve the grand old age of 50 and having daughter, Lincon’s mum Donna secured a place. If I am successful a sport mad and ‘fit’ partner I Freeman and her friend came to I shall endeavour to raise more decided to take the plunge and start offer support. In position I waited money for this fantastic charity. If running (or should I say walking, anxiously for the start, then we anyone would like to join me they jogging, coughing and spluttering)! were off!!! Its an experience difficult are more than welcome. I eventually began to conquer small to put into words, you are carried 3 mile park runs, then progressed along by the wonderful people lining Tracey Hull onto 6 mile events. My partner the streets cheering you on as well (Lincon’s proud Grandma)

8 can book into if you need a little bit more luxury in your life. premierinn. com/en/hotel/NORBLU/northwich- sandiway. They do get booked up quickly with weddings at that time of year. So don’t leave it too late to book in. The day is heavily subsidized. Last year a couple of lovely SWS families helped by raising some funds and donated a contribution towards the costs which was much appreciated. I will be asking for a contribution of £15 per adult and £5 per child. This will include afternoon tea with SWS Party sandwiches and cakes (to die for !) on arrival all your day’s activities and @ Petty Pool 2018 BBQ with side salads in the evening. Teas, coffees and soft drinks. The To all my lovely SWS friends and doing nothing apart from chatting big advantage is we have the whole families, I have a diary date for you, and chilling... centre to ourselves so children can as we all need something to look There will be a campfire in the run wild get dirty, scream, shout have forward to, Saturday 23rd June 2018! evening where we can toast our a melt down and nobody will notice... marshmallows drink hot chocolate The event is for families who or relax with a glass of your favourite As I’m typing this up I’m starting to live with SWS, giving you the tipple or two. If you can play an feel really excited already. I hope you opportunity to socialise in a relaxing instrument we would love you to can all make it. environment, chat with new and bring it and play around the campfire. Contact details :- old friends. For siblings to build [email protected] friendships with other children who If you wish to stay overnight there Mobile :- 07759 638 729 understand what daily life is like are chalets on site they are on a Look forward to seeing you and keep living with SWS. first come first served basis and at a your fingers crossed for a hot sunny You can swing through the trees, minimal cost to cover the laundrette day as this always my biggest stress abseil, visit the farm and meet the bill. (I’ll need to know ASAP on this as the “weather” ! animals, you can jump from the leap they got snapped up in minutes last of faith, or go for a walk around the year) there are camping or caravan Love to you all 40 acres of surrounding woodland pitches available for free. The is a Nicola & Rick xx and lots more! Or just sit around very local (5 mins walk) hotel you

Reduced Water Rates through the WaterSure Scheme You may be entitled to have your water rates capped 19 living in the same household and are receiving if someone living in your house has a medical certain benefits. condition requiring you to use extra water. Before you qualify you will need to agree to a water For example :- meter being fitted, but if you use less than the • Incontinence. capped charge you will only pay the lower amount. • Skin problems - such as excema or any other We had our bill capped at £488 as Liann is medical condition that requires the use of incontinent. So it is well worth doing. significant extra water. • If you have 3 or more children under the age of Jenny

9 Sturge Weber UK – Online Store SturgeVisit our Sonlinetu rWeber gshope W fore productsber UUK producedK – O– n Onlinebylin companiese Store who Store supply merchandise to some of the biggest charities and high street retailers in the Visit our onlineStur shopge Wfor eproductsber U producedK – On byli companiesne Stor whoe supply Visit our online shop for products producedworld. by companies who supply merchandise merchandiseWe aim to provide to some a largeof the range biggest of charities high quality and highproducts street at retailers an affordable in the Visitto someour online of the shop biggest for productscharitiesworld. producedand high street by companies retailers in who the supply world. price,Wemerchandise whichaim to allprovide raiseto some aawareness large of the range biggest of of Sturge highcharities quality Weber and products high Syndrome street at retailers an and affordable the in thecharity. 100%We aim profits to provide goes directlya large range to SWUK,world. of high helpingquality products fund the at workan affordable we do. price,We which aim to all provide raise awareness a large range of ofSturge high qualityWeber products Syndrome at anand affordable the charity. price,100% which profits all goes raise directlyawareness to ofSWUK, Sturge helping Weber fundSyndrome the work and thewe charity.do. We price,are delighted which all raiseto be awareness able to offer of Sturge Christmas Weber cardsSyndrome again and and the we’re charity. really 100%100% profits profits goes goes directly directly to to SWUK, SW UK, helping helping fund fund the the work work we we do. do. pleasedWe are delightedwith the positiveto be able feedback to offer Christmaswe’ve received cards againon the and quality, we’re designsreally We are delighted to be able to offer Christmas cards again and we’re andpleasedWe price are with ofdelighted the the cards. positive to be They able feedback areto offer available we’ve Christmas receivedto buy cards from on again the our and quality, online we’re designs storereally and andpleased pricereally of withpleasedwill the alsothe cards. with positive be They theon salepositivefeedback are atavailable ourfeedback we’ve Family to received we’vebuy Weekend from received on theour in quality, onlineon May. the designsstorequality, and anddesigns price ofwill and the also price cards. be of onTheythe sale cards. are at available Theyour Family are to available buy Weekend from to ourbuy in onlineMay.from our store online and We have a widestorewill rangeand also will be of also oncolours salebe on at insale our the atFamily ourwristbands, Family Weekend Weekend all in featuringMay. in May. our motto “It’sWe not have just a wide a birthmark”, range of colours plus other in the accessories wristbands, such all featuring as pens, our motto and “It’sWe not have justWe a awidehave birthmark”, arange trolleywide of range coloursplustokens, of other colours in all the accessoriespriced wristbands,in the at wristbands, £1 such each.all featuring as pens,all featuring ourbadges motto and “It’s notour just motto a birthmark”, “It’strolley not tokens,just plus a otherbirthmark”, all pricedaccessories plus at £1 other such each. accessories as pens, badges such and trolley tokens, all priced at £1 each. Sam bear is stillas availablepens, badges priced and trolley£5, and tokens, our clothing all priced pricesat £1 each. start from £9.99 Sam bear is still available priced £5, and our clothing prices start from £9.99 Sam bear is still available priced £5, and our clothing prices start from £9.99 The Children’sSam Bear is book still available “What’s priced that £5,on andyour our face” clothing kindly prices written start fromby Ashley £9.99. Ide The Children’s book “What’s that on your face” kindly written by Ashley Ide isThe priced Children’s at just book £5.99. “What’s Postage that on not your included, face” kindly but written we keep by thisAshley to Idethe Theis priced Children’s at just book £5.99. “What’s Postage that onnot your included, face” kindly but we written keep by this Ashley to the Ide is is priced at just £5.99. Postage not included, but we keep this to the priced at just £5.99. Postage notminimum. included, but we keep this to the minimum. minimum.minimum. 201720172017 was was was a a superba superb superb year yearyear for thethe SW SWUKSWUK UK Store Store andand and we we we would would would like like liketo to thank tothank thank each each eachand and2017 every was a one superb of you year who for the purchased SWUK Store products and we orwould sold like products to thank on each our andandevery every every one one oneof youof of you whoyou who who purchased purchased purchased products products or sold oror soldproducts sold products products on our on on behalf. our our behalf.behalf. WeWeWe lookWe look lookforward forward forward to your toto youryoursupportyour support support throughout throughout throughout throughout 2018! 2018! 2018! 2018! Many thanks once again to Steve Waters www.itsecpc.co.uk for continuing ManyManyMany thanks thanks thanks once once once againagain again to to Steve Steve WatersWaters www.itsecpc.co.uk www.itsecpc.co.ukforfor continuingfor continuing continuing toto donate todonateto donate donate his his his histimetime time time and and and skills skillsskills skills sincesince since launching launchinglaunching the thethe the store store store in inin 2012. 2012.in2012. 2012. To view all our products please visit www.sturgeweber-store.org.uk ToTo viewTo view view all all allour our our productsproducts products please please visitvisit www.sturgeweber www.sturgeweber-store.org.uk-store.org.uk-store.org.uk Lisa Massingham LisaLisa MassinghamMassingham

10 Christmas Stall for Sturge Weber UK

On Friday 15th December 2017 my parents, Ivan and Beverly Massingham held another stall at Tesco Superstore in Sheringham, Norfolk, selling hand made wood turned crafts and hand knitted crafts they had made throughout the year. The day was a huge success and every single penny of sales was donated to Sturge Weber UK! In total £339.50 was raised.

Lisa Massingham

11 “We had a wonderful day meeting everyone and sharing experiences. We are very much looking forward to the next one”

Brenda Hunter, William Hunter and Leah Hunter

Scottish Day 24th September 2017

I was delighted to be able to join everyone at the Sturge Lunch was served at 12.30 followed by more chatting Weber UK - Scottish Day last year. Once again it was and playing in the afternoon. held at the Hilton Glasgow and everyone thoroughly Many thanks to all the families who attended the day; it enjoyed the day. was lovely to meet you all. Angelina was not happy when Coffee was served at 10.00 and whilst families chatted she found out I had been without her, so we both hope to the children all played happily with the toys hired from see you all at the next one (Date to be confirmed). Unique Children’s Parties Hire Equipment that Wendy Sturge Weber UK would like to look into expanding Rafferty kindly helped Jenny choose. the day, one of the possibilities would be inviting Beartrice and Beartie, the charity’s travelling bears also a professional speaker to give a talk on some of came; they loved joining in with the fun as well as the the possible effects the condition can cause. More train journey from Norfolk to Glasgow! information will be sent nearer the time.

A table was set up with lots of different products Lisa Massingham from the charities online store along with leaflets and information on Sturge Weber syndrome.

12 “We really enjoyed meeting new friends yesterday and catching up with others we have met before”

Liz Howe, Chris Howe and Philip Howe

“We loved the Scottish family day. It’s a great way to meet other families and get to hear everyone’s experiences with SWS. We really enjoyed ourselves and looking forward to the next one”

Anna Cunningham, Chris Mcleod Nathan Mcleod and Daryl Mcleod

13 Disabled Facilities Grants Overview

You could get a grant from your council if you’re disabled and need to make changes to your home, for example: • To widen doors and install ramps • improve access to rooms and facilities – eg stairlifts, electric bath or downstairs bathroom • provide a heating system suitable for your needs • adapt heating or lighting controls to make them easier to use The council needs to be happy that the work is:

A Disabled Facilities Grant will not affect any benefits • necessary and appropriate to meet the disabled that you’re getting. person’s needs • reasonable and can be done - depending on the age Eligibility and condition of the property You or someone living in your property must be disabled. Either you or the person you’re applying for How to claim must: You’ll need to find out: • own the property or be a tenant • what changes are needed to your property • intend to live in the property during the grant period • the type of work that needs to be done (which is currently 5 years) • the cost of the work

You can also apply for a grant if you’re a landlord and An occupational therapist can look at your have a disabled tenant. circumstances and recommend the type of changes needed.

Application form To get an application form, contact the housing or environmental health department of your local council.

The council will normally need 2 written estimates for the work. They may be able to give you a list of builders or advise you about employing one.

Return your completed application to your local council before work starts on the property.

You’ll get the result of your application in writing within 6 months of the application date.

Medical Records and Scans/x-rays In Memory If you would like copies of your Unfortunately I tried to purchase my Sadly on Medical Records and Scans/X-Rays Medical Records a few years ago, only Monday 9th you can request them from your to discover they had been destroyed October hospital. £25 for Medical Records and as I hadn’t been to hospital for over Craig £10 for all your Scans/X-Rays. You 8 years. I was told I could still access Morrison would need to write ALL on the form my records from my doctor. I bought passed when completing the section for the Liann’s Medical Records a few years away aged 23. Craig had Scan/Xrays. If you just want to view ago and her more recent CT scans recently moved into his the Medical Records the cost is £10. before they were destroyed. own flat with support. Our thoughts are with Hospitals usually destroy Scans and Jenny Denham his family. X-rays after 10 years, so you may wish to ask for them before it is too late.

14 HMRC fundraiser

This donation was from a fundraising event held by HMRC – our department is Large Business Glasgow, based at Portcullis House, Charing Cross, Glasgow.

We hold quarterly charity fundraising events for charities nominated by colleagues. Our Christmas fundraiser was for your charity, following nomination by a colleague whose grandson suffers from the condition. The fundraiser was a ‘Christmas Fun Day’, which included best Xmas tree competition for each team, best Xmas jumper for individuals, ‘guess the sweets in the jar’, and a raffle with a range of donated by colleagues. The event was very well received and we were delighted to have raised £412.65 for Sturge Weber UK.

The winning Christmas Tree entry – Paddington themed as you can see!

Ross Clarkin

Recycle your Ink Cartridges, Mobile Phones www.recycle4charity.co.uk and Postage We would like to benefit from collecting stamps too: citadelstamps.co.uk/recycle-stamps Stamps Simply send postage stamps to: Po box 6107, Stromness, Orkney, KW16 9AB - with the following Please support Sturge Weber UK by recycling your details: Sturge Weber UK, Registered Charity Number printer ink tanks or mobile phones. If you are recycling 1016688 / ink jet tanks, please ask me to send you some bags. To Burleigh, 348 Pinhoe Road, Exeter, EX4 8AF / Tel: recycle ink jet tanks, mobile phones or ink cartridges, 01392 464675 please bring the items to the Family Weekend or post them to me so that I can fill a collecting box. The narrow Thank you for recycling, Antonia ink cartridges don’t raise money, but they do serve to fill a collecting box containing ink jet tanks or mobile phones with the minimum of 25 items so that the ink jet tanks or mobile phones can be recycled in aid of SW UK.

15 creches Tinies crèche staff will be at the hotel from Sturge Weber UK 1pm – 4pm to take care of your children. Please use this opportunity to meet the crèche staff, introduce them Family Weekend to your child/ren and satisfy yourselves that they have all the information they need to support your child/ren Conference while they are in Tinies’ care. After lunch, the British Association of Skin Camouflage 5th, 6th and 7th May 2018 Cheshire will present Camouflage - An Important Role in Patients Well Being. http://www.skin-camouflage. This year’s Family Weekend Conference will be held net/ Followed by Laura Carr from HCB Solicitors who again at the Hilton Hotel, Coventry, which is located off will talk about ECHPs and SEN provision. https://www. Junction 2 of the M6. hcbgroup.com. The teenagers and young adults may like to attend the Camouflage presentation. There will be crèche You can relax at the LivingWell Spa Club with a facilities in the afternoon for the children, again they will personalised beauty treatment, aqua class, steam room be entertained by Bugs n Bones. There will be time for a or have a leisurely swim in the swimming pool. swim before the evening meal. We decided to return to the Hilton Hotel Coventry as the layout and facilities suit our needs. Around two years ago the trustees involved a venue finder to search for a hotel with as many interconnecting bedrooms as possible for families. The Hilton Coventry had the most.

Saturday Morning Saturday Morning will begin with registration and coffee from 11am in the Conference Suite on the first floor, while the children are being entertained by Bugs n Bones. http://www.bugsnbones.co.uk/ Lunch will be at 12.30pm. Information stands will be available.

Tinies Mobile Crèche will be looking after the children and young people in the hotel crèche and on the outings during the weekend. www.tinies.com/creches/mobile-

16 outings and older ones who are more vulnerable. This means all the families can attend the talks in the main conference room secure in the knowledge their children and young people are well provided for.

The buses will start boarding at 8.30am, ready for departure at 8.45am. The outings will finish at about 4pm, with buses returning to the hotel at around 5pm. At both places lunch and a snack are included. At both venues there will be a room for children to leave their bags and belongings and as a “break-out” room if things get a bit overwhelming. For both trips please ensure the children are wearing suitable clothing for the weather.

Saturday Evening Twycross Zoo has indoor and outdoor enclosures, interactive experiences and fun, exciting encounters Registration will be from 5.30pm in the Minster Suite for with over 500 animals from over 100 different species. those arriving later in the afternoon. The children will be You can watch the animals being fed, there is a Wet ‘n entertained by Paul Edwards Entertainments. https:// Wild splash area if the weather is hot and there is an www.facebook.com/pauledwardsentertainments/ from indoor soft play area which we will book for a couple 5.30pm until the evening meal at 7.00pm giving time for of hours in the afternoon. This venue is open to the families to relax and socialise before the evening meal. over-2s who are not staying in the hotel crèche or going He will entertain them again from 7.30pm until 9.00pm. to Whitemoor Lakes. Socks must be worn in the soft Since Sunday is always a busy day, Saturday evening is a play area and a change of clothes will be needed if the good opportunity for everyone to socialise. children use the Wet ‘n Wild play area. Sunday for the children The more adventurous children and young people who are 8 years old or over can choose to go to Whitemoor Registration will be from 8.15am for the children going Lakes Action Centre instead of the Zoo. Here the on the trip and those staying in the hotel in the crèche. children will take part in a selection of exciting and This year we have visited several places together challenging outdoor experiences: Canoeing, High with Tinies’ and we have chosen two venues for the Ropes, Abseiling and Zipwire, and Outdoor Archery. Sunday outing: Twycross Zoo www.twycrosszoo.org for The children will be in four groups so that everyone everyone and, for the over 8s, Whitemoor Lakes Action has a chance to take part in all four activities. Everyone Centre www.acuk.net/whitemoor-lakes The crèche at will take part in two activities before they have a hot the hotel will provide care and gentle entertainment lunch at 12.45pm and then another two activities after for your children who are too small to go on the lunch. Children and young people will need to wear long sleeves, trousers and sturdy shoes/trainers.

More details and the choices of venue and activities will be on the crèche forms which we will send you (one

17 Sunday evening Sunday Evening will begin at 5.30pm and Mark Traversoni will entertain the children until 7.00pm. Families can relax for an hour and a half while their children are having fun. http://www.themagiczone. co.uk/ He will then be performing table magic from 7.30pm until 9.00pm. There will be more fun again after dinner for the children. Jane Howard has organising more fun again until the children are too tired and go to bed. per child) once we have received your booking form to attend the Family Weekend Conference.

We want the children and young people with Sturge Note from Jane Weber syndrome and their siblings to have a fabulous I can’t believe it’s that time again. The Family opportunity at the Family Weekend and on the outings Weekend comes around so quickly. We are really to make new friends, build on old friendships and looking forward to seeing you all again this year. increase their self-confidence and self-esteem. Once again, we will be putting on some games for the children (and big children!) on the Sunday night. Sunday for the adults Last time it went well and we had lots of fun. We Coffee/tea will be served in the Minster Suite from played the Mummy game with toilet rolls, pass the 9.15am for the parents and visitors and registration for parcel, strutted our stuff on the dance floor. I think those attending just for the day. the children had more fun clearing up the tissue The day will begin at 9.45 am with the AGM, followed by once the game had finished! the speakers. We are always looking for more ideas. Please Dr Sarah Aylett - Consultant Paediatric Neurologist contact me through Facebook if there is any game from GOSH. that your children would particularly like to play. All ideas gratefully received. We look forward to lots of Dr Veronica Kinsler - Consultant Paediatric fun and catching up. Dermatologist from GOSH - The new views of Sturge- Weber - where we are now and where we are going. Jane Howard Lunch will be at 12.30 in The Larder restaurant. Dr Gemma Wilson - Clinical Psychologist from GOSH. Oral and Maxillofacial Surgery - To be confirmed

18 Monday As the children (adults as well) enjoy the Balloon Race we will hold one again on the Monday morning. Since it is the May Day Bank Holiday Monday, we have booked a room for the day and organised lunch so families can socialise a little longer.

Lunch will be served in The Larder restaurant at 12.30.

Cost The Weekend is subsidised, the children stay free of charge and the cost for is £75 per adult for the whole weekend. If you wish to stay for one night only (Saturday or Sunday) it is £50 per adult. If you wish to only attend the conference on the Sunday, the cost is £20 per family.

The booking form is included with this newsletter. Although we have reserved a number of bedrooms for our event, we may need to book more. Please complete the enclosed form with your requirements and return it ASAP, but not later than the 5th April in order to ensure we plan everything correctly. You will then receive a confirmation letter and a crèche form, one for each child, which we would appreciate you returning ASAP, but not later than the 14th April, so we employ the correct number of crèche staff to care for your children.

The Committee look forward to seeing you all again and especially our new members.

Jenny, Antonia and Lisa

19 Amelie’s Story Over the next 3 months Amelie began missing her motor milestones; she Amelie was born at full term following for 3 hours. She was treated with could only roll one way, could not a straightforward pregnancy with no emergency medication but she wasn’t sit up, nor use her hands bilaterally. complications. responding. She had to be ventilated At 6 months old she went back into and intubated which brought it under At 3 months old Amelie’s left hand hospital with breakthrough seizures. control. began gently twitching continuously. She was treated again with rescue We instantly took her to the GP who Later she was transferred to the medication but she didn’t respond, so checked for diabetes- this was clear. Evelina Children’s Hospital in London another medication was added. The He told us he would refer Amelie to intensive care. After having every seizures continued on and off all day urgently to a paediatrician for the test possible Amelie was diagnosed for 4 days until the medication had got following day, but upon waking up with complex structural focal into her system. the next morning Amelie began epilepsy; she began on medication At this time Amelie was diagnosed having a bigger seizure. and after a week was allowed home. with left sided hemiplegia and The Evelina continued her care along We phoned an ambulance and she began working with a physio and with our local hospital. was rushed to our local hospital. She occupational therapist, who continued was in status epilepticus which lasted to work with her until she was 5.

20 By the age of 1, Amelie had learnt to sit but not unaided and she was unable to crawl or walk. She began having drop seizures which were provoked by unexpected loud noises. This meant we had to pre warn her if we were to shut a cupboard, cough etc. She would have up to 80 a day. This continued for 18 months. At 2 years old Amelie went back into status epilepticus. The crash team worked tirelessly for 2 hours and eventually got it under control. She then suffered her first T.I.A and seizures continued. Amelie was transferred to the Evelina who did a repeat MRI and she was then diagnosed with type 3 Sturge Weber Syndrome. We felt so much relief finally having answers to all has now been having drop seizures would gag at the sight of soft food Amelie was going through but scared every day for 20 months. She has alone and that there was no way it because we had never heard of it weekly focal seizures and night time was going anywhere near her mouth! and wasn’t sure what to expect. This myoclonic jerks. was when I joined SW UK and the She has been on a rollercoaster with Facebook support group. Amelie is now 5 and can walk seizures In the past, in and out of independently, albeit for very short hospital more times than I can count Amelie began walking independently periods with a slight notice in and though she is having them now, just after she was 2, but there was a weakness, but with physio sessions I am just thankful that they have very marked weakness and she would over the past 3 years, she has come significantly reduced in length- from drag her left leg along. She could only on in leaps and bounds. She wears a 30+ minutes to now 2-5. She has walk for minimal time and fell over an lycra sock with the aim to increase been on and off of 3 new medications awful lot. her awareness of her left side and to in the past 12 months, which have After this Amelie was seizure free for encourage her to lift her toes, as she not been able to control them. As a a period of 2 years and life seemed to still falls over lots and trips very easily. consequence of being on so much be easier for her. But unfortunately Subsequently she suffers with hip and medication, she is struggling with back pain regularly. extreme fatigue. We have to pace her day accordingly and she does a She was diagnosed with Autistic shorter school day to aid this. Spectrum Disorder last year, which came as no surprise to us. We recently saw a keto genic I felt relieved that all of Amelie’s dietician but due to Amelie’s sensory ‘quirky’ behaviours had finally been difficulties around food, this is not an understood by someone else and option for her right now. Amelie is not that I wasn’t being an over protective an ideal candidate for surgery though mother for covering her ears when a it hasn’t been ruled out. Our next fire engine goes past, or buying the option is looking at VNS. same food in the same packaging Despite everything Amelie has and to avoid her screaming and crying. continues to go through, she is a The list goes on! As her mother, bright, extremely funny and very I just knew.. but I think now I am lovely little girl. I am prouder of even more protective as I hate the her every day; she is unbelievably thought of people not being able to determined and doesn’t give up. We understand her. don’t know when things will become She was diagnosed with sensory easier for her, but we try to make the processing disorder around the age of most of every day and have lots of two, after almost a year of me telling fun. X professionals something wasn’t right. Lauren Thompson That she couldn’t tolerate messy play,

21 We also had a tombola, cake stall, homemade jams and Amelie’s chutney stall, hook a duck, face painting, children’s toy sale, Santa visit, crafts for the children and a bouncy Christmas castle which the children and even some adults loved! We had an unexpected amount of people arrive and the day was a huge success. We managed to raise just over Fundraiser £1,200 for the charity from the event combined with collection pots at our local shops and my online just- On Saturday 16th December 2017, we held a giving page. fundraising event on behalf of our daughter Amelie for Sturge Weber UK. Amelie’s school also kindly took a collection at their Christmas production and raised a further £550. Amelie was diagnosed with type 3 Sturge Weber Syndrome at the age of 2 following an MRI during an I had lots of help from family members and close friends inpatient stay, although she had been living with the on the run up and on the day, each running a stall who signs and symptoms to diagnosis. were all just amazing, but my biggest thank you is to my mum, who helped organise this alongside me and who I At this overwhelming time I joined the Sturge Weber couldn’t have done it without. UK charity who welcomed me in and whose advice and support has been invaluable to me ever since. I We all had a fantastic day and something we will all wanted to give something back to the charity and raise remember. Most importantly, we were able to raise awareness of Amelie’s journey with SWS so far. money for this amazing charity, a lot of awareness and Amelie had so much fun with everyone who cares about I asked local shops, theatre and restaurants for donations her in one room xx towards a raffle and was overwhelmed with how generous our town was. We had some really great prizes. Lauren Thompson

22 We also have ready designed Sponsor Forms if you Fundraising would prefer to raise money this way. Perhaps you would like to hold a coffee morning, hold a raffle or We have been asked by a number of people for some turn a special celebration into a fundraising event for ideas and tips on fundraising. We have a fundraising the Charity. If you are holding a raffle, we can send you pack available which Lisa can send you. Sam, our Sturge Weber Teddy Bear as a .

We are registered with Just Giving, so if you are holding For more information please contact:- Lisa Massingham an event or taking part in a marathon you can set up an 2 Castle Close Gresham Norfolk NR11 8RH Telephone events page and for those who pay tax, Just Giving will 01263 577570 e mail;- [email protected] claim back the Gift Aid on our behalf. You can set up a personalised fundraising page at JustGiving http://www. Thank you for considering to fundraise for our Charity. justgiving.com/sturgeweber Without people like yourself the Charity wouldn’t be able to continue the work of supporting families who Or here at Virgin Money Giving http:// have children with this syndrome and fund future uk.virginmoneygiving.com/charity-web/charity/ studies into the syndrome. finalCharityHomepage. action?charityId=1006974 Lisa Massingham

Blank Card Please send me ...... packs of “Love–in–a–Mist” or a “A walk through the bluebells” cards at £3.00 per pack Just a little reminder, we have our blank cards “Love – in of ten. – a – Mist “ designed by Elisabeth Wilkinson and “A walk through the bluebells” in memory of Stewart Kays from Name ...... his collection of photographs. They are ideal for sending Address ...... a note to someone. They also make a lovely small gift or you could include a pack in with a present...... Postcode......

If you wish to purchase our cards, you can either complete Tel. Number...... the form below or you can buy them directly from our online shop: www.sturgeweber-store.org.uk/accessories Please help us by including a cheque with your order. If you wish to pay by bank transfer please ask for our bank details.

Please make cheques payable to Sturge Weber UK and return to:-

Lisa Massingham 2 Castle Close Gresham Norfolk NR11 8RH. Telephone: 01263 577570 e mail: [email protected]

23 What’s that on your face?

What’s that on your face? Is a children’s book that dad, Ashley Ide has written to help children understand what birthmarks are and that it’s OK for people to have them, as we are all unique in our own special ways. Some people are big, small, round, thin, are blind, or just have a different appearance. There is something unique about everyone.

As a parent to his son Ashton, who has a bilateral port wine stain covering roughly 85% of his face, he knows what it’s like on a daily basis for his son. Especially on day trips to new places and when he first attends new places, such as school and this is why he chose school as a location in the book.

The book would be a very useful tool for parents and teachers to help children with and without birthmarks to understand about differences and realise that not everybody is the same and that making comments can upset people. The book has a number of main characters that all are unique in their own ways including a very unique teacher.

We can educate the next generation to be more accepting, our children and future children will be accepted and understood more.

The book was launched at our last Family Weekend Conference and is now available on our on line shop priced £5.99. http://www.sturgeweber-store.org.uk/ Books/whats-that-on-your-face

Printed by Dartprint www.dartprint.co.uk

Designed and illustrated by JoLB: www.jolb.co.uk

24 Sturge Weber UK Facebook and Twitter

There are four Facebook pages that are administered by Sturge Weber UK:

Sturge Weber UK closed Facebook page is a private group for anyone affected by Sturge Weber Syndrome to share views, experiences, seek advice and discuss their concerns. Families share any useful information and links on the page which may be useful to others. There is a useful information file on the page. As it is a closed group anyone wishing to join has to make a request before they are approved by the Admin of the group. If we are not 100% sure that the request is genuine we do not admit them, as families need a safe place to discuss any issues they may have.

Sturge Weber UK – Public Facebook page is our Official Public Face-book Page which any member of the public can follow, it promotes the Charity, helps raise awareness and features many fundraising events and challenges that have been done to aid the Charity. It is used to share useful and interesting information on all aspects of Sturge Weber syndrome as well as any milestones, achievements and birthday wishes to any children or adults who are affected by the condition. I am sure you will all agree social networking is one of the most effective ways to share information. If you have anything you want to share on the page then please do get in touch either by sending us a message or email [email protected] Our Official Public Facebook page can been seen by everyone so please Like/ Share and ask your friends and family to do the same!

Sturge Weber UK Twitter page is linked to the open page above.

Sturge Weber Awareness Day Facebook page was set up by Sturge Weber UK to raise awareness of Sturge Weber syndrome as well other SW charities and support groups on November 1st, the date of the birth of Dr William Allen Sturge.

Sturge Weber Awareness Day Twitter page is linked to the Facebook page above.

Beartie and Beartrice Travel the Word for Sturge Weber UK Facebook page was set up by Jayne Hall. Both Beartie and Beartice attend fundraising events, accompany SW children when they stay in hospital, attend the SW UK Conference and travel on holiday with SW children and of course, the grownups in the UK and to many other countries.

Beartie and Beartrice Twitter page is linked to the Facebook page above.

Below are some photos so you can see what they have been up to in recent months.

Beartrice and Channelle hoping to go for a spin Beartrice and Beartie travelling to the Scottish Day

Beartie selling SW Christmas cards Beartrice and Beartie enjoyed a walk in the country visiting the ponies around Seaford Beartrice and Beartrice loves The Bears having fun Beartie at classic cars Scottish Day

25 SWS mummies respite weekend

It’s a brilliant escape to the fabulous Midland Hotel in Manchester with other Mums who understand what it’s like to live with SWS 24/7. Such a relaxing and fun weekend with something for everyone: Spa, night out with dancing and cocktails, champagne afternoon tea and a chance to shop at the Christmas Markets or the fab shops of Manchester. Lots of chat, fun and laughter. I can honestly say it’s the highlight of my year and am really looking forward to November already!

All Mummies are welcome

Christine Bleasedale

26 Direct Payments

If you or someone you care for get help from social services you can apply for direct payments. These let you choose and buy the services you need yourself, instead of getting them from your council.

You can only get direct payments if you’ve been assessed by social services as needing care and support services.

Direct payments can be made to:

* disabled people aged 16 or over (with short or long- term needs) Liann on holiday in Spain

* disabled parents for children’s services Holiday cover * carers aged 16 or over (including people with parental You can use Direct Payments when you are on holiday responsibility for a disabled child) abroad to pay for services. We use an agency in Spain and Direct Payments will pay for a nurse to come and * elderly people who need community care services sit with Liann. The agency we use is Care 4 you in Spain For more information www.gov.uk/apply-direct- but there may be similar agencies elsewhere. Care 4 you payments in Spain covers a large part of Alicante and its website is www.care4youinspain.com

The important thing is that they haven’t taken you to Welcome to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

Holland So you must go out and buy new guide books. And you by Emily Perl Kingsley must learn a whole new language. And you will meet a whole new group of people you would never have met. I am often asked to describe the experience of raising a child with a disability - to try to help people who have It’s just a different place. It’s slower-paced than Italy, not shared that unique experience to understand it, to less flashy than Italy. But after you’ve been there for a imagine how it would feel. It’s like this...... while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and When you’re going to have a baby, it’s like planning a Holland has tulips. Holland even has Rembrandts. fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. But everyone you know is busy coming and going from The Michelangelo David. The gondolas in Venice. You Italy... and they’re all bragging about what a wonderful may learn some handy phrases in Italian. It’s all very time they had there. And for the rest of your life, you exciting. will say “Yes, that’s where I was supposed to go. That’s what I had planned.” After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several And the pain of that will never, ever, ever, ever go hours later, the plane lands. The stewardess comes in away... because the loss of that dream is a very very and says, “Welcome to Holland.” significant loss.

“Holland?!?” you say. “What do you mean Holland?? I But... if you spend your life mourning the fact that you signed up for Italy! I’m supposed to be in Italy. All my didn’t get to Italy, you may never be free to enjoy the life I’ve dreamed of going to Italy.” very special, the very lovely things ... about Holland.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

27 Benefits

Are you claiming all that you are entitled to?

Disability Living Allowance (DLA) for children under 16 who need extra looking after or have walking difficulties. The DLA rate is between £22 and £141.10 a week and depends on the level of help the child needs.

Personal Independence Payment (PIP) - You must be aged 16 to 64 and have a health condition or a disability. If you’re aged 16 to 64 you could get between £22 and £141.10 a week by claiming Personal Independence Payment (PIP).

Carer’s Allowance is payable to a mother or father caring for a child/adult who is in receipt of Disability Living Allowance - the middle or highest care rate, or Personal Independence Payment - daily living component and look after that person for at least 35 hours a week. Council Tax Discount if you are not in band A you may Council Tax - qualify to drop one tax band. If you are in band A then you may be entitled to a discount of one sixth of your bill. That is if an adult or child is resident and there is an Carers Discount extra room for that person, or extra space is needed, for To claim the Carers Discount all of the following example, to store a wheelchair. conditions must apply to your caring situation: Council Tax Discount for Carers. This only applies to 1) You look after someone who is entitled to the middle those caring for someone over eighteen, who look or higher rate of the care component of Disability Living after someone who is entitled to Disability Living Allowance, the daily living component of Personal Allowance - the middle or highest care rate or Personal Independence Payment at any rate, Attendance Independence Payment - daily living component. Allowance at any rate, or the highest rate of Constant If two people are caring for at least thirty five hours each Attendance Allowance. per week, they may be entitled to up to fifty per cent 2) You provide care for that person for at least 35 hours discount. This will be affected if there are other adults a week, you will be entitled to 25% discount from your living in the house. Council Tax bills and possibly 50% in the case of two Family Fund Trust: funding may also be available from carers providing 35 hours care each per week. The Family Fund Trust, PO Box 50, York. YO1 2ZX. 3) The person cared for is not your husband/wife, or partner (i.e. living together as if married).

4) The person cared for is over l8 years old.

5) The person cared for lives with you.

Please note if there is another adult living in the house and liable to pay the tax, this will affect your entitlement.

If you think you meet all the qualifying criteria to claim Carers Discount you should contact your local Council Tax department.

For further information, see the Council Tax Discounts page.

28 Calendar 2018 Once again I produced a calendar from twelve of my favourite photos from last year. I did pretty well getting about the world too. I visited Berlin, Bermuda and Villefranche in the South of France. These destinations gave me some great photo opportunities not to mention great holidays! A donation from each sale was made to Sturge Weber UK and raised £375.

I already have a few trips lined up for the year ahead and no doubt I’ll be making a calendar for 2019!

Peter Steele

29 We Need Your Help Do you have 3 to 4 hours a week to spare? Do have any skills that you feel would be a help to the charity?

For some time the charity has been run by three trustees who care for their children who have Sturge Weber syndrome at the same time as working outside the home.

We need help with the day to day running of the charity. • Dealing with the hotel booking forms completed by Below is a list of some of the tasks where we need extra families. trustees to help us. • Booking entertainers. • Searching and booking a suitable trip for the • Completing Grant Applications and approaching children. Companies and Trusts for raffle prizes using a • Helping with registration at the Family Weekend. sample request letter. • Making sure everything runs smoothly over the • Help maintaining and monitoring our Facebook and weekend and helping with all the activities. Twitter pages. • Checking e mails regularly and replying where • The preparation of the newsletter. necessary. • Preparation of new leaflets. • Writing letters on behalf of the charity. As a Trustee it is important that you should have the • Publicity via the media, magazines etc. and medical necessary time and energy to devote to the charity. journals. All trustees need to be DBS checked and complete a • Take minutes at meetings. straightforward online Child Protection Training course. • The Committee (All Trustees) help with other tasks, such as the organisation of our Family Weekend If you are interested please contact Jenny, jenny@ Conferences and Regional Days. sturgeweber.org.uk by the 14th April 2018. • Booking a hotel. Jenny Denham Secretary Position If you have secretarial skills and have around 3 or 4 Wonder hours a week to spare, would you like to volunteer your Wonder is a film about a boy with a facial time as a secretary for the charity? difference with the story told from different The role involves writing letters on behalf of the charity viewpoint of family, friends and bullies. when required, taking minutes at Trustee meetings and The film only deals with facial difference and not other meetings we attend. Researching and writing many other aspects that several of us will have also grant applications, helping with the day to day running seen, but well worth a watch and many aspects of the charity and with the organisation of the Family will resonate with many Sturge Weber families Weekend Conference. Other tasks include keeping the (you might charity Facebook and Twitter pages up to date, checking need hankies emails regularly and answering when necessary. for some of the You would need to be available to attend three to four film!). committee meetings a year in London, for which travel The film will expenses will be reimbursed. be out on DVD If you are interested or would like more information soon. about the role, please email [email protected] by 14th April 2018. John Sutton

Jenny Denham

30 ensure good seizure control. Ketogenic diet In other children, who take longer to respond to the diet, they appear to receive something that is deficient from in Sturge Weber their diet. Seizure control is often not obtained for about one month but then the effects are not so dependent on Syndrome the ketone levels. It is impossible to predict into which group your child will fall. Not all children respond to the The Ketogenic Diet is a regime for managing epilepsy in diet. children - a dietary alternative to anticonvulsant drugs - that has recently experienced a revival of interest. There are currently two main diets used in the United Kingdom. These are the Ketogenic Diet and the Modified Since the drug phenytoin appeared as a really effective Medium Chain Triglyceride Diet. anticonvulsant, some people might say that the Ketogenic Diet had fallen into disuse. The revival of interest has In the Classical Diet the child receives the majority of the been largely due to an American film producer, Jim fat in the form of cream, butter, oil and other naturally Abrahams, whose child had epilepsy and despite the occurring fatty foods. The diet is calculated on meal efforts of eminent neurologists, no drug seemed to exchanges so that each meal has the same balance of fat, control the child`s seizures. protein and carbohydrate. The dietician would calculate these for you and would try and incorporate foods your In his research Abrahams came upon the Ketogenic Diet, child likes into the diet. which no one had told him about, he introduced it to his child and was lucky enough to find an improvement. He In the Modified Medium Chain Triglyceride Ketogenic then made a film, “First Do No Harm”, dramatising his Diet some of the fat comes from naturally occurring own experiences. However, it is important that you seek sources and some comes from medium chain triglyceride the help of a qualified dietician should you wish to try it oil which is commercially available and can be prescribed and the following information has been supplied by Dr. R. by a doctor. This diet works on an exchange system which Schwartz from the Central Middlesex Hospital in London. again will be explained to you in detail by your dietician. The Ketogenic Diet is a high fat, low protein, low Whilst on the diet it is necessary to take vitamin carbohydrate diet designed to treat epilepsy in children. supplements and in small children mineral supplements, It has been used extensively throughout the world since and the urine should be tested daily for ketones. the 1920s and has been shown to help in seizure control If your child is started on a Ketogenic Diet it is very in many children. important that it is followed very closely and the child The aim of the diet is to increase the daily intake of fat does not receive any additional sugary foods or medicines which may be achieved either by increasing the amount as this reverses the effect of the diet. of animal fat such as cream, margarine, butter, or by In those children who respond to dietary therapy their taking special oils which are incorporated into the diet antiepileptic medications are gradually reduced and in mixed with low fat milk. The protein (e.g. eggs, cheese, some cases can be discontinued. This would not occur meat, fish) content of the diet is carefully controlled to until the child has been on the diet for at least a month. ensure that the child receives adequate protein to enable normal growth. The remainder of the calories come from The diets are very safe. Occasionally when they are carbohydrates (e.g. sugar, bread, cakes, biscuits). The first introduced the child complains of tummy ache amounts of fat, protein and carbohydrate need to be or diarrhoea. As they become accustomed to the diet calculated by a dietician so that the child does not receive however this resolves. It is important that the child has an more calories than they require each day and by carefully adequate fluid intake, to prevent kidney stone formation adhering to special formulae the child will grow normally which has been reported in 3 or 4 children. It is also and not become excessively fat. Also because the amount important that they receive the vitamin supplements. of fat is carefully controlled this will not be laid down in Because the calories and the amount of fat is carefully the blood vessels and body making a child at risk of later controlled and monitored there is no increased risk of heart disease. heart disease. If the diet is strictly followed your child will not become fat. It is not clear how the diet work and it is possible that there are two separate mechanisms. When the fats are The ketogenic diet can be used in any child except those broken down they produce ketone bodies which are who are unable to tolerate milk products. They can be passed throughout the body and then are excreted in adapted to all ethnic diets and if they work for your child the urine. These can be tested very simply by dipping a they are associated with good seizure control and general special stick into the urine (or on to a nappy) to ensure well being. that the child has become ketotic. It is thought that in Dr R Schwartz MBBS FRCPCH Central some children these ketone bodies are actually working Middlesex Hospital like antiepileptic (anti-fit) medicines. In these children the level of ketones is crucial and must be maintained to

31 Thank Yous Peter Steele Raised from selling calendars of his photography to family and friends As well as individual articles of fundraising we would like Linda Whelehan Collecting euros to thank everyone listed below for their kind donations. Stean Anthony Donation We apologise if we have missed anyone. We would be Louise and Brendan grateful if you are organizing an event, if you would Stimpson’s friend Donation please write a few words and send us some photos to Beartrice and Beartie, SW UK Travelling Bears Anonymous donation include with the article. Sharon Appleton Donation from WH Smith for Sharon Mrs N Levy In memory of Allan Rodney Jacobs in their stock shop Debbie Sutton Collecting box Lavender Lodge Donation Isabel Smith Donations DS and MV Smith Donation Tracey Hull The Great North Run Keith MacDonald Donation via PayPal Pam Stevens Donation Karen Ferris Donation from the Radnor Park Christine Priestley and Golf Club in memory of Craig Mr Pierce at ACE Energy Collecting box Morrison Beryl Longworth and Lyn Morrison Collection from her son, Craig’s tenants at Mill funeral Spring Court Donations Biljana Pawlowa Donation via PayPal Donaion David Meniss and Alyson Walker Donation via PayPal instead of Simon Ayres Donation posting Christmas cards Donella-Marie Webb Donations raised by sales and Ross Clarkin Fundraising event held by HMRC donations via “elfin girl” staff in Glasgow Mandy Parnell Collecting tin at The Dragon Pub Julie Mooney Donation made from CalMac Joy Corlett Donation Ferries Ltd. Frances Poole and Keeley Fran and Keeley’s 2017 Running Peter Taylor In memory Allan Rodney Jacobs Challenge Susan Bishop In memory Allan Rodney Jacobs Lauren Thompson Amelie’s Christmas Fundraiser for Jim Hori Grant from SVB Foundation Sturge Weber UK Margaret Stirratt Donation in lieu of sending Leon Egmore Tesco Superstore Christmas cards Ivan and Beverly Roz and Bob Mason Donation Massingham Sale of handmade items at Tesco Mavis Bagley Donation in memory of her Superstore, Sheringham husband Denis David Lawton Collecting box in memory of Doris Gowling WLG (UK) Lawton Charitable Trust Donation Eve and Jo Hawkins In memory of Allan Rodney Jacobs Natalie Dalton Collecting tin at her office David Covell In memory of Allan Rodney Jacobs Lily Waters Lily’s Hair Cut for the Little Ruth Summers Donation in lieu of sending Princess Trust and raising money Christmas cards for SW UK

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