Nursing care at home for local children with life-threatening or AUTUMN Newsletter terminal illnesses and 2016 support for their families

Fantastic Family Fun Day old. Doctors at the hospital couldn’t her family over the years. The idea to believe that even though he was hold a Family Fun Day came to her in Harry came into the office to incredibly ill and on considerable doses January and she came to the office to see us so that we could ask him about of vital medication, he was still bouncing talk about her plans for the day. Becci the very happy and successful Family around in his cot. Now a delightful 7 was worried that she wouldn’t be able Fun Day that his mother, Becci Knight, year old, he attends his local school and to raise very much money, but was organised during the Summer on the rarely has time off. He plays football and reassured when we said that anything Parklands Playing Fields. He said it never seems to slow down, and like all she raised would be wonderful and that was ‘amazing, fantastic, super!’ and Snowdrop children he lives every day to raising awareness of the charity was he said that his mother was ‘great!’ On the full. also really important. the day there was something for everyone, stalls, games, a Many friends including Natalie and massive raffle, a fun- fair and so Haley helped her to visit shops and much more. businesses in search of raffle prizes. They were overwhelmed by the Becci has had years of worries kindness and generosity of so many and fears about her son’s health local people. as he developed a lung disease which has seen him rushed into The day was indeed fantastic and throughout the day Becci proved that Southampton and St Richard’s hospitals I asked him if he minded being in she could run an event that many where he was given lifesaving treatment hospital and he said he liked being on professional event organisers would on many occasions. Becci remembered the children’s ward at St Richards as find hard to undertake. Thank you Becci once when he was being taken by he looked forward to being with play and everyone who ambulance and struggling to breathe, therapists Kerry and Shelley! that all he wanted to do was watch the attended, helped traffic as they sped by! Becci and her family have been and supported her. supported by Snowdrop since Harry She gave us an To look at him jumping around you was first diagnosed and she desperately incredible £939 wouldn’t think he had ever been ill, or wanted to ‘give something back’ to from the day. that he still needs oxygen at night. That, thank Snowdrop, the Snowdrop nurses says Becci, has been his story since he and Counsellor, and everyone involved was diagnosed when he was 1 years with the charity who has helped her and In this Issue Checkatrade Jail Break Challenge - Pages 2-3 • An Evening with Frank Bruno - Page 5 Checkatrade Jail Break Challenge No money, no phone calls, just handcuffs, swag bags and an escape to support Snowdrop.

The Checkatrade Foundation, the they didn’t know in advance! They then Claire Allen, Fundraising Manager for the charitable arm of Selsey based had to make their way to back to the Checkatrade Foundation said ‘We are Checkatrade, handed over a whopping hideout in without spending delighted to have supported the cheque for £6,966 to The Sussex any money or using mobiles to call any Snowdrop Trust as it is such a fantastic Snowdrop Trust following their friends for a lift. Only their wit and powers cause, based locally that provides care successful Charity Jailbreak Challenge, of persuasion could be used to blag at home for children with life threatening with terrific support from Spirit FM. some free transport. illnesses, providing nurses and financial help for their families. We even had a The event started at the Chichester Spirit FM covered the event live team of Snowdrop nurses who took Park Hotel, when teams arrived dressed throughout the day, following teams and part and were kindly given a lift back by to impress! There were fairies, jailbird finding out about their progress. Listeners police after earning their travel chicks, golfers, safari gear, traffic were encouraged to give teams some by washing cars! All the teams looked cones, sailors, neon ravers and more! help and the support from the public was brilliant wearing a variety of costumes, They were then handcuffed together amazing. Teams travelled back on buses, and we loved hearing all about their and boarded a coach to take them trains, a boat, quad bikes, motorbikes, adventures and travels throughout the to ‘prison’ courtesy of Richardson’s classic cars, police & fire vehicles to day. I’d like to say a huge thank you to Travel. Teams then made their escape name a few. Some walked more than anyone that supported us or donated, and were dropped off in Horsham, a others but they all did so well. we had a fantastic day and we’ll be back staggering 30 miles away, a location next year!’

Claire Allen from Checkatrade Foundation and India Ede from Spirit FM present Chairman and Co-Founder Di Levantine with the cheque from Checkatrade

Well done to the Snowdrop Care at Home Team who collected the most money in their ‘buckets’ on the day.

Close Shave for Snowdrop

Inspired by her friend Ritu, who had her head shaved for charity a year ago, special needs teacher, Nuria Molina-Rivas decided to have her head shaved to raise money for Snowdrop! Nuria said that it was while working at St Richards R/C Primary school she first became aware of the wonderful work of The Snowdrop Trust. In front of parents and children, a local hairdresser not only cut Nuria’s beautiful hair but also her son and her two daughters. The girls had volunteered to have their long hair cut and sent to The Princes Trust so that their hair could be made into wigs for children who had lost their hair due to cancer treatment. To her delight and ours, Nuria and her family have already raised £2,291

02 Stay up-to-date with stories and fundraising /snowdroptrust @SnowdropTrust Checkatrade Jail Break Challenge No money, no phone calls, just handcuffs, swag bags and an escape to support Snowdrop.

Kevin Byrne Founder and Managing The incredible gift of nearly £7,000 Director of Checkatrade talked to many by Checkatrade helped to pay for the of the Teams before waving-off the Annual Days Out when we invite many merry bus load of participants as they Snowdrop families to choose a day out headed out of Chichester to be taken to for all their family. These days provide a the unknown destination! much needed break away from the day to day problems facing Snowdrop children The Checkatrade Foundation was and their families and most importantly, supported by many companies and memories. 57 families enjoyed their day huge thanks must go to; Tesco Extra, and many have written to say that it had Horsham, Chichester Park Hotel, been a real treat to be able to go as a Richardson’s Travel and David their family, something that some would have driver, Cake Magic for their delicious found impossible to afford themselves. cake. Also, Fontwell Park, Sainsburys Chichester, Tesco and Hotel Chocolat Chichester, for their prizes. One family having fun on their special day out

Music from the movies enthrals

Hugh Dennis compered an evening to remember when the Walton Voices and The Southdown Concert Band joined together to perform in ‘A Classical Night at The Movies’ in Chichester Cathedral. The audience were treated to a concert of such a high standard that they were talking about it for weeks. The forty musicians in the Band were conducted by their Musical Director Tom Hodge and the sixty singers from Walton on Thames were under the baton of their Musical Director Jonathan Kilhams.They had all been rehearsing for months to bring this spectacular concert to Chichester. Alison Woodward, a Snowdrop mother, gave a very moving talk about how Snowdrop had helped her and her family when her little son had been diagnosed with leukaemia. Sadly, Miles passed away 3 years ago and Alison bravely talked about his illness and how it had affected her entire family. She thanked Snowdrop and particularly the nurses for their wonderful care and support. Our Patron Hugh Dennis was ‘Outstanding’! Bringing his well know humour to the event, he introduced each piece of music in his own inimitable way. With his help it really was a huge success on every level. The collection at the end of the concert raised £797 and in total, with sponsorship, the concert made £3,618. Plans are already being made for another Concert next June and we hope you will join us.

03 Chairman's We even benefit from the The Snowdrop tooth fairy's visit!

Report Annual Walk Darcy and Amalee sold some of their little bits and bobs and then Darcy had a The very special This year was definitely one of the best! visit from the TOOTH FAIRY! She added Snowdrop Children’s The weather was perfect, the helpers so this £2.00 to their collection and gave us Community Team helpful. The water for the teas heated up £25.00. Well done Darcy and Amalee, continue to provide when needed, and everything worked thank you so very much. the care and support to plan. A Big thank you to Nathan from that the Snowdrop They are certainly ‘Party on the Grass’ in Arundel, who so our little stars. families depend on. There generously puts up the tea marquee, are 91 Snowdrop children who are cared all by himself and all for free. Thank for by the Team. 73 of these children you to Molly from Truffles Bakery who need constant care and 18 children are in remission or have recovered from once again donated gorgeous cakes, operations but still need the teams Katy Alston for her donation from her support. Funds raised by so many ice cream sales and Becci Knight and generous supporters enable Snowdrop her husband who also gave us a huge to continue to provide this vital care, for donation from the sales of their burgers. these very special ‘Snowdrop’ families. Over 800 people enjoyed the afternoon and we hope we can do it all again next Two New faces and one new role! May! We raised nearly £7,000 from this We said a fond farewell to Angela much loved annual event. this Summer as she left Snowdrop to live in Wales. Angela was with us in the Snowdrop Office for 6 years and was so committed to the £1,000 from all Luc Concert Success charity that she commuted weekly to Wales for over 2 years! Julie also said year gigs Kenji Luc is a pupil at Bishop Luffa good bye to us so that she could help School and is an accomplished Cellist her husband set up his own business. ‘The Alternatives’ and Pianist. Kenji played piano & cello a rock group from We welcome Liz Stuart our Office pieces by Schumann, Haydn, Liszt and Manager and Claire Stubbs, our Admin Arundel, love to Chopin at a concert held in St Georges Assistant, to the Walberton Office Team. raise money for Church Whyke. There was also a guest charities and appearance from the Luc Sisters and Ashley Kuchanny has also joined our Snowdrop was Yuriko Luc. It was a lovely evening of merry band and is our first Charity lucky enough to Manager. She has been working with beautiful music, and a fantastic amount be their choice of £400.70 was raised for Snowdrop. A Children on the Edge in Chichester for this year. five years and is very keen to meet our Huge thank you to all the Luc family for supporters, to be involved in our annual holding the event. events and to introduce new ones too. Ashley will also be meeting representatives of our Corporate Bridge Tea Supporters that include A Bridge Tea was held in Bosham which was Glanvilles Legal services organised by old friends of Snowdop, Ros Brandon Macdonald Oates LLP Solicitors and Lesley West. They were helped by many of their (Petersfield & Midhurst) friends and their husbands! It was a brilliant success J. Sainsbury’s (Chichester) with the tickets selling and the whole,afternoon Natures Way enjoyed by everyone. Ros and Lesley worked their White Stuff socks off getting all the teas ready for the ‘break’, Hays Travel Chichester. which took a great deal of manoeuvring in the kitchen! We are truly grateful to everyone who They were delicious and certainly appreciated by the players. With the entrance fee and continually supports Snowdrop. raffle monies, we were presented with a cheque for £835. Thank you to all involved. Di Levantine Chairman Co-Founder, Christopher Friend of Buzby and Blue, Chichester’s successful and very popular Hairdressers and Beauty Therapists, took part in a gruelling Triathlon to help Snowdrop children. Chris has been sponsored by many friends, family and customers and has been able to give us a magnificent donation of £970. Thank you to Finishing Line everyone who contributed. The Marathon 2016 raised a staggering £22,565 for Snowdrop Russells Garden Centre Snowdrop Furniture Outlet Congratulations and a big thank you Russells Garden Centre’s Snowdrop Furniture Outlet still needs furniture as they sell to all of our runners. the donated and then painted furniture so quickly. Thank you Lesley and Richard Phillips who have already been able to give Snowdrop £2,756 from their unique idea for fund raising, and also to the volunteers who do such a brilliant job painting the furniture. 04 Sainsbury's customers and The Three staff choose Snowdrop Villages

Walberton Fontwell and Binsted Support Snowdrop in Style

Months and months in the planning, the WALBINFONT festival was held over two days in the Summer and was organised by Suzanne Clarke Chairman of the Walberton, Fontwell and Binsted Parish Council. We were delighted that Snowdrop was voted by the WALBINFONT Committee to share the money raised during this week end with POP (Protect Our Parish). Our Patron Nick Herbert M.P. opened the proceedings and the fete brought the villages together. Cakes and even We were very excited to be chosen by the staff and customers of Chichester besoms! were on sale and the crowds Sainsbury’s as the superstore’s charity for the year. The Manager and his team of visitors enjoyed browsing the stalls, are already planning a series of fundraising events within the store, which you can taking part in various games and of follow on our Facebook and web site pages. course the teas. Willie Austen played The eye catching 17’ banner is now in place outside the store announcing the for over 200 people in the evening, partnership. who had come along with their picnics and dancing shoes. Thank you to Full Tilt Graphics Bognor Regis and PM Graphics Emsworth who provided the banner and to Saskia Snel for designing it. It really is the icing on the The incredible cheque for £2,800 was cake to have our logo where everyone can see! recently presented to Snowdrop by Suzanne. An Evening with Frank Bruno hosted by The Inglenook at

International boxing star Frank Bruno was the guest of honour at The Inglenook. Jack and Sam, Directors of Luv Carpets, and Faz from Ockley ABC Boxing Club were the Promotors of the evening and we understand that there were some very special auction prizes up for grabs!

Frank Bruno donated a signed boxing glove, which has been given to Sam Hedger. Sam was one of the Spirit FM Heroes and our front page star in a previous newsletter.

Snowdrop was chosen by the promoters to receive half of the money raised from that evening and £1,700 was our fantastic share!

A huge thank you to the organisers for what proved to be a very popular and successful evening. Oli Hicklin, Faz, Frank Bruno, Jack Keywood and Sam Shury

05 Thank you! What a difference a year makes Many donations are received throughout the year from our loyal Having been in the post of Volunteer co- supporters. Here are some of the ordinator for nearly a whole year now, I’ve almost seen a complete cycle of the donations we have received this ‘Snowdrop Year’. From an initiation at the Summer: deep end at the Snowdrop Christmas Party last December to the pleasure of talking to INDIVIDUAL/ORGANISATION DONATIONS many people at the Snowdrop walk, I have Indoor Bowling Club £ 314 now experienced many of the events that Social Club £102 Snowdrop is famous for. I have also had the Bishop Luffa school £1,580 privilege of getting to know the volunteers, Chichester Free School £449 without whom I wouldn’t have a job to do! They are a truly fantastic bunch of people Chichester College £844 and it is a pleasure to work with them to Donnington Horticultural Society £100 provide support for our families. Downland Arts Society £216 F&G Transport £250 I have been busy behind the scenes, Friends of Emsworth Community Health £2,000 ensuring that the mountains of paperwork, J.R. Tidiman £474 policies and procedures that are a necessity are all in place Kings Arms, Arundel £1,145 and allow things to keep running smoothly. I have written two handbooks for Lancing college £1,542 Volunteers, a ‘Driver Handbook’ and a ‘Volunteer Handbook’ – both hopefully Pink Pub, Bognor £299 providing the volunteers with useful information to help them in their roles. Rose Green Co-op and Post Office £367 We now have use of a Blue Disabled Badge for our volunteers when they are St. Anne’s Church HM Naval Base £200 driving Snowdrop families. This has proved a great help, especially in London Sutton Lent Lunches £505 where dropping off and parking at some hospitals is very tricky. The Stables, Fontwell £252 Wayfarers Masonic Lodge £100 There are 20 Snowdrop Family Volunteers who provide help in one of 3 ways Wimbledon Village Club £200 to our families. Some volunteers commit their time regularly, once a week or Worthing Pavilion Tourists £300 fortnightly to help families. They do all sorts of things – cinema trips, swimming, free Church £950 help with light household tasks or accompanying a trip to the shops to name Yess Electrical £340 a few. Others provide their time on an ad-hoc basis and may accompany our Monica Lucas and Ann Dobbin £2,610 nurse support workers on outings or provide other short-term support as the need arises. The third group are volunteer drivers who take, pick up and often wait for families while they attend appointments at hospitals all over the South of To help us reduce our England. They all do an amazing job and I am thankful for them. postage costs and send our Newsletters to you @ If reading this makes you think about becoming a volunteer, do get in touch, via email please contact us at I’d love to speak to you. [email protected]

Thank you. Helen Crosby Snowdrop Family Volunteer Co-Ordinator 01243 793622 Volunteering with Snowdrop – My experience so far!

I first met Snowdrop’s wonderful There is no set agenda. Most mums with Chairman Di Levantine in 1989 when small children need at least six pairs of she very generously gave her time once hands, all senses tuned 24/7 and ideally a week as a volunteer on the wards at two pairs of eyes – one in the back of St Wilfrid’s Hospice. It was during my their heads. So where does that leave work with Di over the following three our Snowdrop families? years that I heard the first rumblings – Entering into a Snowdrop family’s preparation for the birth of Snowdrop. world and sharing in just a few of their Now almost 25 years later I am delighted struggles is a very privileged position. to be part of the team of volunteers The maelstrom of support required by where, under the guidance of Helen, these families, in order that they are able I currently find myself helping a lovely to manage care at home whilst bringing Snowdrop family for just a couple of up a young family, is actually very hard hours a week. to envisage. There are so many ever- changing needs.

06 Volunteers Who we are... Diana Levantine I started as a volunteer driver about two years Chairman & Co-Founder ago and I soon realised that I had something CEO (unsalaried) that was highly valued in the Snowdrop office, a car with seven seats capable of carrying a whole family to a hospital Valerie Seddon appointment! Vice Chairman & Trustee

I drive Snowdrop families to one of the several hospitals that provide Trustees specialist care for children. This could be Helen Court Southampton but more usually is Great Stephen Elsom Ormond Street Hospital in central London Oli Hicklin or the Royal London in the East End. I drop the families off, make sure they have my mobile number to let me know when they expect to be finished Patrons and then look for somewhere to park. This used to be a major challenge in central Clive Behagg (Vice-Chancellor Chichester University) London but Snowdrop managed to acquire a Blue Badge this year, which is great Mary & David Bowerman CBE - I can just leave the car on the yellow lines in Great Ormond Street and go for a Hugh Dennis coffee! Lady Miranda Emmet Nick Herbert M.P. I often have about six hours to wait but there’s plenty to see in London, though I make sure I am never more than about 20 minutes’ walk from the car, in case the Rt Rev. Dr Martin Warner (Bishop of Chichester) appointments finish earlier than expected. I take the view that the families have quite enough to worry about, without the added headache of tracking down their The Snowdrop Children’s Community Team driver. Jane Evans Michele Walker I’ve learned a lot since taking on this role, for example that driving in the middle of London is not as scary as I thought. I still get toots from other drivers but not as Leanne Asling many now and, I have to admit, I’m occasionally guilty of a bit of tooting myself! I Anna Jones have come to realise too that the web-based journey planners are not entirely to Jackie Wheatland be trusted and that it is sensible to add at least an hour to the calculated journey Claire Dorey time. Additionally, I have become comfortable with passengers who perhaps don’t feel like talking in the car. Nowadays, I take my lead from them - if they are happy to chat, so am I, but silence is fine by me too. Phil Portway Family Support Counsellor I know that what I do is only a small part of the Snowdrop support package but T: 01243 793617 I can see that it means that there’s one less thing for the families to worry about during what is clearly often a very anxious and stressful day. That’s what makes it Helen Crosby all worthwhile. Family Volunteer Co-ordinator Paul Featherstone T: 01243 793622

Karen Spencer Team Administrator Volunteering with Snowdrop – My experience so far! T: 01243 793619 The Westhampnett Centre 28-29 Westhampnett Road When I turn up for a couple of hours on It is always so lovely to see the Chichester, a Monday morning the question I most children, to play or read stories, even PO19 7HH often ask is, “What can I help you with just to observe that all are safe and today?” well and it has taken time for my T: 01243 793619 Snowdrop mum to feel comfortable I really don’t mind what I am asked to asking me to do a few tasks around do. I have been lucky enough to share Registered Charity Address the house. I don’t mind if it is the in visits to Ingfield Manor where The Unit 3 The William Booker Yard, The Street, washing up, the ironing, popping out Dame Vera Lynn School does inspiring to the chemist or the post, cleaning Walberton, West Sussex BN18 0PF work with very young disabled children the kitchen or a bit of sewing. If it is T: 01243 572433 and the family are now exploring another job ticked off her endless list, E: [email protected] opportunities to receive hypnotherapy - while giving her time to meet the many W: www.thesussexsnowdroptrust.com in which it is possible I may have a role needs of her very special children, then later in the year. However, the reality is Registered Charity No. 1096622 that is my reward. that most of the family’s needs are of Limited Company No. 4557686 quite a mundane nature. Penny Whitehead (Limited by Guarantee)

07 Star Supporters! Joss does it again

Tony Wright has been a really true Last time New Zealand friend to so many people in this area and particularly Snowdrop. – this time the length of the UK.

His shop in has A HUGE CONGRATULATIONS to Joss Smale been the centre for all local groups for completing his 1,200 miles hike from to buy their trophies and medals etc. Football, darts, bowls and Land’s End to John O’Groats. What a fantastic pool clubs and schools to mention achievement. We hope the blisters have healed only a few, have relied on him for I was privileged to present the and the bones stopped aching Joss! their prizes and all their trophy trophies, which is always held at Joss takes on these extraordinary treks to raise needs. He has helped us all in his the Worthing Pavilion Bowls Club. money in memory of his little nephew Quin and unique and quiet way, bending over This time was the first I attended backwards to get the job done! without Tony. Snowdrop is very very grateful to him and his friends for their unbelievable generosity. He has supplied our Snowdrop Having recently been diagnosed Walk medal for 15 years! (at much with a ‘treatable but not curable His Just Giving page at time of printing is a less than cost) illness’, as he told me, he is massive £3,892. He has never wanted gratitude planning to sell his very successful or public acclaim for his charity business in Littlehampton and has work, and he has sponsored many. already stopped working. If you’ve Snowdrop has always been close met him, you will agree - He is to his heart and for many many a one off! He has old fashioned years he has sponsored the C & values and is kind, generous and M Trophy Bowls Championship in has a wicked sense of humour! He Worthing, and has always insisted really is loved by so many of his that it was for Snowdrop. No other. customers. We are all very grateful He has raised thousands of pounds to Tony for all the help he has given for us and from this year’s event we us and for his friendship. were given £850. 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. • £70,000 will fund our entire Nursing Team for 3 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.thesussexsnowdroptrust.com and donating on line • Setting up a Standing Order with your bank – please call us for details Please call the Snowdrop office on 01243 572433 to make a • Leaving Snowdrop a legacy in your will – talk to your solicitor about arranging this donation by card. • 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