Nursing care at home for local children with life-threatening or AUTUMN Newsletter terminal illnesses and 2015 support for their families Abseiling for brave Tommy A local estate agent from Sims Williams After his initial 15 hour emergency in took on Portsmouth’s iconic surgery to remove a tumour the size of Spinnaker Tower for Snowdrop. Towering a duck egg and subsequent operations, more than 170 metres above sea level – he’s on the road to recovery. But it’s two and half times the height of Nelson’s a long road, one that has seen him Column – big hearted Richard Moores undergo radiotherapy and chemotherapy was spurred on to complete his abseiling treatment to treat his condition. challenge as a show of support for his We all know how dramatically cancer ‘eight year old friend’ who is being treated can affect our adult lives and how we for a brain tumour. need to ‘be strong’ to fight This is what he said. After his initial 15 it and we know how scary that can be. But ‘I want to tell you “ hour emergency as an 8 year old! That’s about a friend of mine, just not fair, that must a really nice kind lovely surgery, he’s on the be so much guy. He likes all the road to recovery. But to have to deal with. normal things, Xbox, At 8 I was still scared football (well kind of, it’s a long road that of the dark!! he’s a Chelsea fan!) has seen him undergo oh and he loves early radiotherapy and My friend is so much punk music – his braver than me, he favourite track is the chemotherapy comes in to see me at Splodgenessabounds ” work with his infectious classic ‘Two pints of lager and a packet smile and full of chat and tends to leave of crisps’! Yep, he’s just your average fun with a couple of chocolates tucked loving guy. in his pocket – much to his mother’s annoyance!! But he’s so far from average, he’s only 8, he’s got a great bunch of school friends, He’s being helped out by the wonderful wonderful family, he’s doing really well at ‘Snowdrop Trust’ and they’ll be an school and he’s also a great goal keeper important part of his rehabilitation over for his local under 9’s football team and the coming months. I wanted to do trains with the Portsmouth academy. something to help out and try to show him that I can also be a tiny little bit But his world and the world of his family brave. and all his friends was flipped upside down, completely out of the blue, he was Richard Moores abseiled The Spinnaker diagnosed with a brain tumour… Tower in Portsmouth and raised £3,022 for the charity who as he said ‘are being so helpful to his friend’. In this Issue Sunny day out at The Weald and Downland - Page 3 • Pink pub to Paris or bust! - Page 4 – 5 Chairman's Report In Memory of Miles Tristan Gall wrote on his JustGiving This newsletter is a site ‘To keep the memory of my son celebration of heroes of and hero Miles alive and to give every shape and size. something back to Snowdrop, this wonderful charity, to help children Since the last edition have the support they need during we have been a hard time, my friend Ed and I took enthralled by the Pink on the challenge of riding the entirety Pub to Paris Super Heroes. Their of the way (from escapades started at the Snowdrop Winchester to Eastbourne) in one day. Annual Walk when some of them turned That is 100 miles of off road riding, up dressed in their costumes and after climbing over 10,000 feet, almost the posing for photos they took off over equivalent of scaling Scafell Pike, the hills capes swinging! They took Snowdon and Ben Nevis. As much Bognor by storm as they cycled at the as we both enjoy biking this was a front of the Bognor Carnival floats, they really tough challenge that pushed attended school events and so much us to the limit. more. They have inspired so many people and made them aware of the My son Miles was the most charity, and the vital help we have, and amazing, brave, kind, fun and loving continue to provide for local families. person I have ever known and more of a man than I could ever hope to The Snowdrop children are all heroes be. He had to go through hell with as they cope with treatments which his treatment for leukaemia and he can make them feel very poorly, never complained and to lose him operations which are invasive, hospital to this horrible disease after he appointments and inpatient stays. fought so hard was cruel and unfair. They cope with it all. Whilst going through Miles’ treatment Siblings are the unsung heroes too. the ‘ Snowdrop Trust’ was like Miles’ mummy Alison, also wanted to Family life is turned upside down when having a supporting family around that give something back to Snowdrop and one of the family has a serious illness meant Miles could have less time in as a talented basoon player she and her and it really does affect the day to day hospital and their love and support was friends performed in a concert in the lives of brothers and sisters. We think always there for him and for us. Truly Baptist Church in . Alison about them too and offer days out and remarkable people that befriended, was interviewed by Phil Hewitt from sometimes the Volunteers, who help helped, supported and guided us as a The Chichester Observer and she said Snowdrop Families, can be asked to family through this terrible time.’ “There is no way I could ever repay give siblings special support. These Snowdrop for what they did. You can volunteers are also heroes. They help Tristan and Ed completed their just try to do small bits, but they were parents, drive families to and from astonishing challenge to themselves wonderful. hospitals and become special friends to and were delighted to have raised parents and children. £1,834.08 already for Snowdrop The very generous and appreciative children and their families, and their concert audience gave £1,310 in the exit It goes without saying that the Justgiving page is still open collection. Snowdrop nurses and counsellor www.justgiving.com/ridingformiles are heroes. The families depend on their professionalism, experience, compassion and support. Di Levantine Snowdrop Annual Chairman Co-Founder CEO (unsalaried) General Meeting

Welcome to our new Phil Portway Snowdrop Counsellor talked to the AGM about his work over the past Trustee Stephen Elsom 10 years. Stephen is a Snowdrop father whose He said he soon realised that it was a little daughter Lucia was diagnosed very important role within the Team and with leukaemia 2 years ago and after that Snowdrop is a way of life which he treatment is now in remission. fully appreciated and accepted. He has He wanted to help Snowdrop in anyway been able to help parents and children and was delighted to accept our to cope with many issues, fears, phobias invitation to join the Board. He has had a and bereavement. clothing business in Chichester with his father for 20 years.

02 Stay up-to-date with stories and fundraising /snowdroptrust @SnowdropTrust In the very words of one of the children it was simply “the best day ever”! Sunny day out at The Weald and Downland Open Air Museum

A warm welcome awaited Snowdrop families at The Weald and After so much excitement the families had certainly worked Downland Open Air Museum, Singleton on a sunny afternoon up an appetite for the tasty tea which was laid on by Mary, in August by Director Richard Pailthorpe and his staff. This her team of volunteers and many of the Museum staff, who wonderful day out was the idea of Mary Tomlinson who has brought out plates loaded with sandwiches and cakes which been a supporter of Snowdrop since it was founded and who were soon demolished with much enthusiasm! has been involved with the Museum for many years. This special afternoon visit was organised by two of the 26 Snowdrop children and their families explored this managers at the museum, Karen and Lucy, who saw to fascinating Museum with its collection of 50 internationally everything, from parking to arranging the activities and also important historic buildings all set in 40 acres of picturesque compiling, printing and handing out special maps with all the countryside. The Museum staff also laid on plenty of interesting activities listed. hands on activities. Children were able to visit the ‘Smelly Snowdrop would like to say a HUGE thank you to the Weald Zone’ where they could have a go at making a lavender bag and Downland Open Air Museum for so generously giving the and a tussie mussie (which is a small, fragrant posy). Many of Snowdrop Families such a warm welcome. the children also enjoyed dressing up in Victorian clothing and judging by the amount of laughter they all enjoyed playing the Victorian games.

th st Date for your Diary • Grittenham Barn Christmas Market - 20 and 21 November 03 Pink Pub To Paris Or Bust!

A group of friends, all local men, decided to cycle to Paris on 16th It was a miracle that Batman June 2015. It’s just under a couple of hundred miles, which for was able to take part in the a competent rider, isn’t too much of a distance, HOWEVER, they PPP challenge at all, as limited themselves to £25 each to purchase a bike for the ride - he had a life-threatening The worse the better. They had a 1970’s ladies shopping bike, a operation himself when he three wheeler, vintage gentlemen and ladies bikes, and even a received a kidney donated vintage tandem. And they were wearing full fancy dress for the by his own mother. Which made his 200 mile ride even entire journey. more remarkable! They covered all of their own costs, and gave up their own Issey Riley was also time, to raise money for The Sussex Snowdrop Trust, and raise dressed for the party as the awareness ‘of this fantastic charity’ as they said, ‘who are Wonder Woman. Having unique in providing ‘nursing care at home’ for local children just completed treatment who have a life-threatening illness or who may be terminally ill for a brain tumour, she along with financial and emotional support for their families’. was certainly a very Three years ago they cycled from Bognor to Brugge, on special Super Hero. £107,616.13 raised mountain bikes, and raised just over £22,000 for Snowdrop. People lined the roads to wave This time they wanted to raise more as every pound really does to them and wish them well. They took Bognor by storm and help and make a difference to the charity. thousands of their Facebook followers tracked them every mile For months they planned their extraordinary trip, meeting that they cycled from Bognor to Paris. regularly after their training sessions and, dressed as Super Paris came to a standstill as 16 English cyclists dressed in Heroes, they attended as many events as they could including Super Hero outfits and waving the Union Flag rode along the Bognor Carnival and Bishop Tufnell School Fete! the boulevards and eventually arrived with an escort of They left The Royal Oak - ‘The Pink Pub’ in , and were French policemen on motorbikes, at their destination - The given a heroes send off by their families, friends, fans and many Eiffel Tower. Snowdrop children and parents. Little Oscar was thrilled to be photographed with his look-alike and hero Batman.

04 Issey and her superhero!

They arrived back in Bognor late in the The Super Heroes were Oli Hicklin, Mark night exhausted but on a high, having Ward, Ben Long, Alastair Smyth, Jason achieved what they knew would be a Smith, Gary Pugh, Pat Cullen, Richard huge challenge. Over the next few weeks Scopes, Paul Sherwood, Martin Bryant, they didn’t give up their fund raising Allen Porter, Jack Keywood, Brad Knowles, efforts. Appealing to every friend and local Jez Brooks, Jamie Huband & Dale Stevens. business to donate to Snowdrop. Every Colin Hicklin & Damian Lindley drove the day the amount got higher and higher! support vehicles and fed and watered the Super Heroes throughout their adventure. The presentation party a month after the Pink Pub to Paris Cycle ride, was Jan Cattermole (Pink Pub) has been behind spectacular. The boys cycled on their old the cyclists every step of the way, providing bikes from to Bersted and of food, encouragement, raffle prizes and course in their Super Hero outfits. Once support in every way she could. again their fans turned out to wave to So many people from all over the county, them. The cars, buses, vans and motor and even further away, have been part bikes blared their horns and just as they of this extraordinary fund raising event. arrived at the pub the heavens opened, Snowdrop can’t thank the Snowdrop thunder clapped and the rain poured Super Heroes enough for raising the down. No one cared. money that will ensure that the charity can Families, friends and many parents continue to help local children and their of Snowdrop children all managed to families. It will pay for 6 months nursing squeeze into the marquees put up by care by our superb Snowdrop nurses. Chichester Canvass and the fun began. They have also boosted the awareness of A cheque 8’ long was presented to the charity to educate the community about Snowdrop Co-Founder Di Levantine. the significant help that Snowdrop provides The cheque was made out for a for children and their families, which money staggering £107,818.13p. just can’t buy.

Bonjour La France!

£107,616.13 raised

Leading the Bognor Carnival 05 A first for snowdrop... Thank you! 5 places for the marathon!

Many donations are received Snowdrop on the run! throughout the year from our loyal supporters. Here is just a Supporters of Snowdrop have taken part and that will keep me going’ What a selection of those who have helped in so many different activities to raise challenge for her as she hadn’t taken funds for us and we invite readers to take part in anything like it before. Snowdrop in recent months. up the challenge to support Snowdrop She was sponsored by many listeners, INDIVIDUAL/ORGANISATION DONATIONS and raise funds in anyway that you like. friends and family and raised £6,023.26 The Beach Club - in memory We applied for Marathon places 15 of Kenny Harvey £3,841 A massive thank you to the other Pagham Pram Race £750 years ago! And this year we were finally marathon runners too who were Bruce East Wittering PCC £580 allocated 5 places. Mckinnon from London (£3,662.85) John Hollands £424 Sally Austin MD of Spirit FM and a Jason Smith (£2,125.69) Laura Wright Blackdown Clay Shoot £1,000 & Sharon Ellis (£2,239.25) Bishop Luffa C of E School - Charity Week £1,950 Snowdrop Trustee, was one of the first Owen Kenny Partnership £2,000 people to take a place. She sent a text What an incredible result from our first ReTreat Beauty Salon & Richard Pearce from London ‘Blooming nervous now Marathon places. Hairdressing - Beauty evening £500 but just have to keep remembering 1st Guides - bag packing at Sainsburys £100 why I’m doing it. It’s all for Snowdrop Sussex Masonic Charities £600 Temple Lodge 4962 £450 Scout Council £243 Byron Court Residents Assoc. Strawberry Tea £125 Summersdale Garage - Lavant Duck Race £231 Kings Walk Clay Shoot £1,510 West Dean Primary School Fete £310 Riley Motor Club £878 Molly Hedger - Head shave £600 West Chiltington Friends of School Moya Summers Curry Evening £2,134 P Sheppey - Sale of Produce £12 Daniel King - Head Shave £130 Keith Simpson, Los Amigos Band £480 Crown and Anchor - Quiz Night £180 Iona Hooley - Fish & Chip Quiz Night £36 Bognor 10K run Coffee with Friends Group, West Wittering £52 St Marys Church Walberton PCC £142 Chichester University - Rounders Match £127 There was a huge turn out for Snowdrop at Also running were a team of teachers, Carpet Bowls - Charity Match £25 Lael Smith - Sponsored Silence £66 the Bognor 10k run! with their headmaster Mr Carter, from St Philip Howard School in Barnham. One of Maureen Sinclair - Table Top Sale £57 One team which included family and their students is a ‘Snowdrop youngster’ Sue Sargeant - Charity Golf Afternoon £71 friends were running in memory of baby T Lewry & K Gardener - Sponsored Danceathon £60 and has been undergoing treatment for Noah. They have raised thousands of many months. The staff all admire her Special Supporters: pounds for Snowdrop in the past and determination and with her in mind these this was yet another way of raising funds Social Club teachers signed up for the 10K run. Baby Talk, Chichester for us. Anne Dobbins & Monica Lucas Dan the Veggie Man Emsworth Delicatessen East Wittering PCC Hare & Hounds, Stoughton The Holly Tree, Walberton St Thomas a Beckett Rita Hope The Inglenook, Pagham Jewsons Ltd, Bognor Regis Flower Festival Kings Arms, Mandarin Chef Takeaway Flower Festival in St Thomas a Beckett Church Barry Mitchell - Pagham with stunning Arrangements depicting Rose Green Co-op ‘Memories of World War II’. Rose Green Post Office The Star & Garter, East Dean Members from several local flower clubs came together to arrange Stephen’s Pharmacy, Chichester outstanding flower displays to represent the second world war. The vicar said Sussex Camera Shop, Chichester ‘We believe in the importance of working with, and for, our local community’. Sandy Lewis, Puzzle Club Snowdrop was so grateful to be the chosen charity to benefit from this Corporate supporters Festival. Di Levantine was presented with a cheque for £1,500 at a morning service this Summer and was given the opportunity to talk to the congregation Southern Water Glanvilles about the work of the charity. White Stuff Butlins The Ship Hotel, Chichester Natures Way To help us reduce our postage costs and send our Newsletters to you via 06 @ email please contact us at [email protected] Thank you. Snowdrop Annual Walk If you didn’t make it to the Snowdrop Annual Who we are... Walk. You missed a treat! Delicious cakes made by dozens of supporters and hundreds Diana Levantine donated by Truffles Bakery. The weather was Chairman, Co-Founder & perfect for the 600 walkers who obviously (unsalaried) Charity Director enjoyed every minute. Valerie Seddon Nathan from Party on the Grass - the Vice Chairman & Trustee marquee specialists in Arundel, gave us the use of one of their elegant marquees. Trustees Arundel MP Nick Herbert joined us for the Sally Austin afternoon and the Super Heroes, including the Hulk, Batman Helen Court and Wonder Woman, posed for their photo before taking off over the hills! Stephen Elsom Many Snowdrop families came on the walk, which made the day very special. Oli Hicklin Over £5,180 has been raised from the event. Deirdre Hoggarth Richard Jordan Patrons Clive Behagg Clay Shoot Mary & David Bowerman CBE The scenery was stunning at the top of a hill in Lavant where a Clay Shoot was Hugh Dennis held in aid of Snowdrop, raising an amazing £3,041.84. Steven O’Brien, one of the Lady Miranda Emmet organisers, said the day was a great success and the turnout of over 250 men, women Rev. Dr. Martin Warner and youngsters, was far more than they had expected. It was also a day for families Registered Charity Address and friends who just came along for the hog roast and delicious cakes, which the Unit 3 The William Booker Yard, The Street, volunteers had provided and served. Walberton, West Sussex BN18 0PF T: 01243 572433 E: [email protected] W: www.thesussexsnowdroptrust.com Dead Brilliant Registered Charity No. 1096622 Limited Company No. 4557686 (Limited by Guarantee) A very big ‘Thank you’ to Peter James, the international best selling crime Jane Evans writer, for accepting our invitation to Michele Walker talk at the Snowdrop Literary Lunch. Leanne Asling He entertained our 200 guests with his Anna Jones absolutely enthralling talk about his Christine Hawkins life as a writer. He explained that he Jackie Wheatland has been able to tap into many murder Claire Dorey £1,414 raised investigations as he accompanies police The Snowdrop Care at Home team in and around Brighton to provide the The Westhampnett Centre accurate details he insists on, when he across the length of New Zealand’s 28-29 Westhampnett Road writes one of his books. Most people South and North Island, to raise money Chichester, West Sussex attending the lunch had read all of Peter for Snowdrop. Looking very fit after PO19 7HH James’ books and were delighted to be his trek, he admitted that it is difficult T: 01243 793619 to come back to reality after 5 months able to see and listen to him in person. Phil Portway This thrilling event raised £1,414. walking in one of the most beautiful landscapes in the world. He gave Family Support Counsellor Another guest was Joss Smales who Snowdrop £4,064 which was a fantastic T: 01243 793617 had just returned from his epic journey result from his incredible trip. Helen Crosby Family Volunteer Co-ordinator T: 01243 793619 Walberton Gardens Day Karen Spencer Team Administrator T: 01243 793619 Walberton gardens, old to new, traditional to contemporary, were visited by hundreds of gardening enthusiasts to raise funds for St Mary’s church and The Sussex Snowdrop Trust. It was a glorious day and the gardens had been lovingly planted, weeded, pruned and mowed. An Art Exhibition and teas all Welcome helped to raise the wonderful gift of £1,500 for Snowdrop. Our new Pump Bottom Rocked! Patron! Thank you Julian and Kathy at Pump Bottom Farm for putting on the fantastic Lady Miranda Emmet was evening in aid of Snowdrop. The Hoedown band had everyone line dancing and even Snowdrop’s President for 18 years square dancing! Followed by The Jive Aces - Britains Got Talent finalists. A huge raffle and we are delighted to announce of prizes, given by local businesses and friends, took the final donation to £659.87 that she has agreed to be a Patron. 07 Give us a call on Coffee, Cake 01243 572433. and Christmas Cards Our 2015 Christmas Cards have now arrived at the office and we believe it is our best selection yet! We are once again running our Coffee, Cake and Christmas Cards campaign and we need YOUR help. If you feel you could host a get together, whether it is morning coffee, afternoon tea or evening drinks and nibbles then why not use this to All our cards are also for sale at raise funds for Snowdrop. We can provide you ‘Cards for Good Causes’ at: with invitations, posters, Snowdrop information leaflets and of course a box containing a Assembly room: North Street, Chichester selection of our Christmas Cards. from 3/10 – 17/12 If you would like to take part in our Coffee, Cake Capron House: North Street, and Christmas Cards campaign please give us a from 2/11 – 16/12. call on 01243 572433. Also available from: Snowdrop office: Walberton every Tuesday – Thursday 10am to 4pm. Make a Donation

• Snowdrop spends over £350,000 every year on direct care • A £200 donation will provide an Oxygen Saturation Monitor. for our families. • £100,000 will fund our Nursing Team for 6 months. • A £10 donation will provide books such as ‘A Little Bag • Any amount donated however small or large helps us to of Worries’ for our counsellor to use in his work with our continue with our vital work with local children with life children and their siblings threatening or terminal illnesses. • A £50 donation will help a family struggling with travel costs • Snowdrop receives no government funding and relies solely to hospital. One mother travelled 46,000 miles in 18 months. on the generosity of our local community.

You can make a donation by: • Filling in the donation form below and returning to us by post • Visiting our website: www.thesussexsnowroptrust.com and donating on line

• Setting up a Standing Order with your bank – please call us for details Please can you help us to help • Leaving Snowdrop a legacy in your will – talk to your solicitor about arranging this these children and their families • Text “snow22” together with your donation eg. “snow22 £20” and then send it to 70070

Donation Form

I/We would like to make a donation and enclose £ Please treat this donation as Gift Aid. I confirm I have paid or will pay an amount of Income Tax and/or Capital Title First Name Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs) that I donate Surname to will reclaim on my Gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not Address qualify. I understand the charity will reclaim 25p of tax on every £1 that I give on or after 6 April 2008. Postcode

Please make your cheque payable to: The Sussex Snowdrop Trust and send your donations to: The Sussex Snowdrop Trust, Unit 3 The William Booker Yard, Walberton, West Sussex BN18 0PF. 08