Many children that Snowdrop has cared for over the years have been diagnosed with brain tumours. They are renowned to be very difficult to treat but new methods and medical equipment are giving children more hope.

Tyler Murphy is one such youngster. He was diagnosed 4 years ago and has undergone radiotherapy and chemotherapy treatments. Last week he and his mother Jan were interviewed by the Chichester Observer because they wanted people to know about this condition and to raise awareness of Snowdrop.

Tyler and his twin brother were at St Philip Howard’s School when he became ill and now they are at Chichester College. It has been difficult for Tyler to keep up with his class mates as he missed so many days of school when he was being treated for the tumour.

NewsletterSPRING | 2014

Care at Home for children with life-threatening and terminal illnesses and support for their families

Snowdrop Family Fun Day Page 02Ballet for the Over 50’s Page 03Snowdrop Skydive Page 04Our New Office Page 08

'You just hope it will be OK... It probably will'

This has a knock on effect, as it does for all children when they have a serious illness.

In the article Tyler describes how he was rushed into Southampton Hospital where he had emergency life saving surgery. He was in and out of hospital for 2 years and he has had about 10 operations. Last year the tumour began to grow again.

The staff in the hospital were wonderful, however the family thought there would be no support once they got home, but a Snowdrop nurse visited them immediately and the nurses and the Trust has been supporting them ever since.

Continued on page 2

In this Issue

02

Lisa from The Lamb loses her locks for SnowdropIn front of dozens of customers of the Lamb Inn in Pagham, Lisa Kane had her hair cut off to raise money for Snowdrop. Once the hair dropped to the floor, the hair-dresser finished by shaving her head. What a sacrifice for a beautiful lady! Lisa told us that she has M.S. and that she can’t take part in events like marathons, so she felt this was something she could do to help the very sick children that Snowdrop cares for.

She donated £1,707 from her unusual fund raising event, which was given to her by customers, friends and family.

Thank you to everyone that helped her to reach this fabulous result.

We have signed up with Fontwell Race course for the first Snowdrop Family Fun Day which will be on SUNDAY MAY 25Please put it in your diary and join us on the day. The children will have a

fabulous time with bouncy castles, trampolines, stalls and so much more to enjoy.

Local business are sponsoring races - we will have a bucket collection at the exits and we will be selling

100 tickets which Snowdrop has been given by the Fontwell Race Course Directors.

If you are interested in buying tickets or if you want to Sponsor a race and to take advantage of the fabulous opportunity to advertise at Fontwell and support the Snowdrop Trust.

Please contact the Snowdrop office on 01243 572433

If you missed out this year, grab the chance now and book early to sponsor a race for next years Fontwell Snowdrop Raceday!

Continued from page 1

Jan, his mother, said Tyler has been fantastic and all he wants is to warn people to look out for the symptoms which were missed originally when he first showed signs of being ill. To start with his headaches were thought to be migraines but eventually when he was given an MRI scan, the tumour was seen.

Tyler is like all teenagers, he wants to live life to the full, however the brain tumour has changed his life and he has bravely ‘gone public’ as he wants people to understand and be aware of how a tumour can change your life and the lives of your family and friends.

Tyler told the newspaper about how his eyesight has been affected and how he just has to take his medicine and hope that it’s going to be OK. It probably will, he says.

Donate online! £1,707 raised

Press Release

www.thesussexsnowdroptrust.com

Tickets bought in advance of the day are £10 Children are free.

Picture courtesy of Kate Shemilt at Chichester Observer

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A fond farewell to Kirdford Art GroupTom Collins was saddened that the Kirdford Art Group had folded after many many years. They have held an art exhibition every year and for the past 10 at least, they have raised funds for Snowdrop.

The committee agreed that the money left in their account when it closed down should be given to Snowdrop. Tom said that he was delighted to be able to give the charity a cheque for £2,053.14.

We are so sorry that this group is no longer together and thank them all for their support over the years. It has always been a pleasure to see the exhibition and to meet up with Tom Collins.

The Balandis - Lilley Ballet School for the over 50'sThe Balandis - Lilley Ballet School for the over 50'sSandra Lilley has been teaching Ballet and Tap in this area for 17 years and over the past 8 years her daughter has shared her passion and helped her to train this group to an outstanding level. Sandra choreographs the dances and the group have given demonstrations at the Mundham Gala, the Bognor Bird Man event and BBC’s The One Show.

There are over 20 in the class whose ages range from 55 to an incredibly sprightly 93yr old. Once a year they put on an impressive show of ballet and tap and this year they performed to a very appreciative audience in Mundham Village Hall, where they practice every week.

There were dozens of raffle prizes and most of the proceeds were donated to The Sussex Snowdrop Trust.

Nothing can stop SheilaghSheilagh Blyth is running the London Marathon and is training through wind, rain and hail. She has been promised a large donation by one of her relatives so she has an added incentive to finish! Good luck Sheilagh.

Help Sheilagh on her way. Visit her justgiving site: www.justgiving.com/sheilagh-blyth

£2,053 raised

Picture courtesy of Kate Shemilt at Chichester Observer

04

Karen and Di take to the Sky!Karen Hurst arrived in the office in January and said that she wanted to do something in memory of her precious little grandson Taylor. She said she wanted to go Skydiving and to raise money for Snowdrop, as the nurses and the Trust had helped her family throughout the 3 years that Taylor was ill with a brain tumour.

I was alone in the office that day so there was no one to dissuade us! As a grandmother too, I thought that I should join Karen in this mad venture and so I signed us up to skydive on July 14, the day that little Taylor lost his long fight with cancer. Since that day, Jackie one of our Nurse Support Workers has been sponsored by aspectbeauty.com to join us and now photos of us all getting ready for the skydive appear regularly on Facebook.

Karen comes regularly to see us in the office to catch up with all the events that she is organising. One idea was that she thought I could dress up as Buzz Lightyear and jump off Bognor pier in the Bognor Birdman challenge. As I was not too keen on that idea she was asked to find another friend to take the plunge. Thank goodness she has!

The Bognor Carnival also gave Karen another idea for raising awareness and funds for Snowdrop. A lorry has been found and a driver. The theme is Pirates, so please look out for us on the float as we will need all the support possible.

Di Levantine

To sponsor Di, Karen and Jackie please visit: www.justgiving/SnowdropSkyDivers

Many donations are received throughout the year from our loyal supporters. Here is just a selection of those who have helped Snowdrop in recent months.

DONATIONSWest Sussex Travel Society £2,000 Patricia Routledge Trust £1,500 Trefoil Trust £2,500 Epigoni Trust £5,000

INDIVIDUAL/ORGAINISATION DONATIONSB Seaman, donation £100 The Mulberries, Rock and Roll Evening £519 Arun Roller Skating Club, donation £180 West Wittering Horticultural Society £250 House of Fraser, Santa bucket collections £565 Littlehampton Rotary, donation £1,000 Midhurst Lodge, Raffle £310 Valley Golf Society, Golf Day £4,275 Chichester Quilters, donation £1,200 St James Church, Birdham, Crib Service £336 Midhurst & Petworth Inner Wheel, year of support £750 West Sussex County Council, Christmas Events £604 Walberton School, Carol Service £448 St Andrews URC, donation £250 Bacqus Group, in lieu of Christmas cards £200 Sackville School, donation £256 Littlegreen School, donation £200 Tillington PCC, donation £250 Itchenor Society, Carol Singing £250 White Stuff, donation £375 CIS Golf Society, Raffle £210 Arundel Players, productions £130 Selsey Golf Veteran’s section, year of support £714 Lakeland, donation £244 Rumboldswhyke CE Infants School, donation £288 Canon Owen & Mrs N Everson, Annual Word Puzzle £450 G Jeremy & The Beaters of Watergate Estate, donation £1,880 The Snowdrop Inn, donation £200 Star & Garter, Quiz Night £260 Chichester College, Staff BBQ £293 Mrs Chuck Lo, Birthday donation £500 Chichester Cathedral, external giving £1,080 Pagham Pram Race, events £500 Co-op, Haywards Heath, year of support £5,000 Beaver Tool Hire, donation £1,000 Rosalinda O’Brien, Slimming World, donations £150 Walberton Coffee Shop, entrance money for 2013 £436 Debbie Smith, 3 x cycling events £246 Alex Wright, Bacchus Half Marathon £717 Helen Spandley, Bournemouth Marathon £1,649 Hamish Gairns, Marchwood IFA Chichester Half Marathon £566 Lisa Kane, Head Shave £1,707

COLLECTING TINSBoxgrove Village Stores £98.28 The Dean Ale & Cider House, East Dean £497 Hennings Wine Merchants, Chichester £40 The Inglenook, Pagham £38 Kids Stuff Toys, Chichester £39 Lotus House £707 Rose Green Post Office £808 Russells Garden Centre £563

Thank you!

Visit our website to see plans for our Autumn Lunch. www.thesussexsnowdroptrust.com

Follow this story and others at www.facebook.com/Snowdroptrust

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Who we are...Diana Levantine Chairman, Co-Founder & (unsalaried) Charity Director

Valerie Seddon Vice Chairman & Trustee

Oli Hicklin Margaret Eva OBE Deirdre Hoggarth Richard Jordan Trustees

Linda Paterson Charity Coordinator

Angela England Office Administrator

Registered Charity Address Unit 3 The William Booker Yard, Walberton, West Sussex BN18 0PF T: 01243 572433 E: sussexsnowdrop@btconnect.com W: www.thesussexsnowdroptrust.com

Registered Charity No. 1096622 Limited Company No. 4557686 (Limited by Guarantee)

The Snowdrop Care at Home team The Westhampnett Centre 28-29 Westhampnett Road Chichester, West Sussex PO19 7HH T: 01243 815227

Jane Evans Leanne Asling Anna Jones Gill Cunningham Michele Walker Tash Langmaid Gemma Millyard Emma Colllins Vicki Warren Children’s Nurses T: 01243 815227

Jackie Wheatland Sharon Deakins Support Workers T: 01243 815227

Phil Portway Family Support Counsellor T: 01243 815227

Ann Houlihan Family Volunteer Co-ordinator T: 01243 815273

Karen Spencer Team Administrator T: 01243 815227

Limited edition prints are a sellout success Bernard Charles contacted Snowdrop with an idea and after many meetings and discussions his idea finally became a reality. Bernard is an artist who has been a very gifted and highly respected potter, painter and ceramics teacher. His pottery is exquisite and although he hasn’t ‘thrown’ a pot for several years, they adorn his flat where visitors can admire his skill and brilliance. Bernard also produces black and white lino type pictures and his idea was to make limited prints of his work to sell in aid of Snowdrop and his own charity that provides transport for the elderly.

The plan came to fruition when he invited friends and acquaintances to an exhibition of his unique and very popular prints. A picture from the Trundle to the sea including the Chichester Cathedral spire, sold out quickly to very lucky patrons.

From the sale of these pictures and from generous donations, Bernard gave Snowdrop £1,175.

£1,175 raised

Do you have an email address?To help us reduce our postage costs and send our Newsletters to you electronically, please do send your details to: sussexsnowdrop@btconnect.com

06

It might be old news seeing a photo of a Christmas party but it was such a fantastic party and the staff at Butlins couldn’t have helped us any more than they did. They made sure that the families enjoyed the whole day and the children are already hoping that we will be invited again. The room was beautifully decorated with Christmas decorations and the grotto was just perfect.

Our own Angela England from the Snowdrop office, loves dressing up as Santa’s elf and she spent months planning the grotto. As you can see, she did a fabulous job. Two of the special Snowdrop Family Volunteers also managed to help Santa! while others helped us to look after the guests, as children and their parents took to the dance floor with Bonnie Bear.

Butlins has supported Snowdrop so much over the last 4 years and Jackie and Sharon, our nurse support workers, are a familiar sight at Butlins, as they take Snowdrop children and siblings for outings on a regular basis, giving mothers a little time to do other things or to be with their other children.

The party was sponsored by Supreme Clean and over 100 children came along. Each child went home hugging a present which had been donated by generous Spirit FM listeners, customers from The Halifax, Chichester and Adecco, Chichester.

The brilliant local photographer Stephen Walby and his wife Liz provided every family with a photo to remember their fabulous day at Butlins.

We at The Sussex Snowdrop Trust are constantly trying to find new and innovative ways in which we can attract the attention of businesses to support us.

As part of our most recent attempt to grab people’s attention we sent letters to businesses entitled ‘How can we get our foot in your door?’ along with a child’s shoe! We’re hoping that when a small shoe falls into their lap it will give us the chance to engage with them, so that we can tell them about the vital work of the charity.

How can we get our foot in your door?

The Sussex Snowdrop Trust's Annual Children's Christmas Party

Visit our Facebook page and ‘Like’ us to stay up-to-date with stories and fund raisingwww.facebook.com/Snowdroptrust

Consider supporting Snowdrop with any fund raising schemes they run

Sponsor our bi-annual newsletter

Have a collecting box on their premises

Help us to make the local community aware of the charity

Come up with any ideas for fund raising within their business

Donate a raffle or auction prize

If you know any businesses that might help us, please let us know.

We also ask businesses if they can;

Picture courtesy of www.stephenwalby.com

07

Over our 21 years the Care at Home Team has been able to expand because of the generosity of the community, so Snowdrop families can receive the best support and help that they need. The Snowdrop nurses and counsellor work from an office in Westhampnett in Chichester and visit the children in their homes.

Snowdrop Counsellor Phil is a member of the special Care at Home Team and he has encouraged some of the Team to take part in the Bognor 10K run. There are also teachers and friends of Snowdrop that are all joining this merry band of runners.

Please sponsor them by going to www.justgiving.com, search for Team Snowdrop and click on Karen Spencer.

Phil has lost weight and been training too! He is now so fit that it will be hard to keep up with him! He is so dedicated to Snowdrop and he works such long hours as our counsellor, to take part in this run is definitely going the extra mile!

The Snowdrop Family Volunteers have been helping so much this year by taking Snowdrop children and their siblings on days out and accompanying the Nurse Support Workers too. They have also been taking children and their parents to and from hospitals both locally and in London and some of these trips take all day. Sometimes they are asked very late in the day when an appointment is urgent. They all help whenever possible.

Our volunteers have always been remarkable and I know that parents are very grateful to them for their help.

Ann Houlihan, our Volunteer Coordinator, would like to hear from anyone that would like to be considered to join this team of special volunteers.

Please call her on 01243 815273

Oli Hicklin was invited to join the Board of Trustees this year.

He is a director of Bognor Motors and a great supporter of Snowdrop. 2 years ago he and his fellow cyclists took part in a Bognor to Brugge cycle ride and raised a phenomenal £22,000 for Snowdrop.

Trustee News

The Snowdrop Trust

CHARITY WALK

Arundel Castle Park Sunday 11th May

1 to 5 p.m. (Last start at 3.00 p.m.)

NEW !! Children with scooters can complete up to 2 mile course Entrance £3 adults £1 children (under 12s free)

ALL SPONSORED WALKERS - FREE Dogs on leads welcome

Car parking on site Teas - Refreshments - Stalls

Sponsor forms and information www.thesussexsnowdroptrust.com

Welcome to our newest Senior NurseWe are delighted to welcome Michelle Walker to the Snowdrop Team as a senior Children’s Community Nurse and she will share the role with Jane Evans, who has fortunately for Snowdrop and the families, been with us as our Team Lead nurse for 12 years. From her previous role as a Community Nurse, Michelle knows many of the families and already several mums have welcomed her to Snowdrop through our Facebook page.

Our fantastic Care at Home TeamGet Involved!

Picture courtesy of www.simonwardphotography.com

08

Donation Form

Make a Donation

Please treat this donation as Gift Aid. I confirm I have paid or will pay an amount of Income Tax and/or Capital 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 to will reclaim on my Gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give on or after 6 April 2008.

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.

Title First Name

I/We would like to make a donation and enclose £

Surname

Address

Postcode

The charity needs to raise over £350,000 a year to pay for the very special and experienced Snowdrop Community Childrens’ Nurses, our Snowdrop Family Counsellor and the other members of the Care at Home Team, plus the vital financial help that is given to families. The Trust receives no help from the Government and depends on the generous support of this community – schools, clubs, church groups, trusts, organisations and individuals. Every penny is appreciated and enables Snowdrop to be able to continue to provide this vital help.

Please can you help us to helpthese children and their families

Our the new office in Walberton. It doesn’t look very exciting but all the hard work goes on here and we love being in our new home.

This was the first ‘post’ that introduced Snowdrop to the thousands of people that now read our messages.

Remember to visit our new Facebook page

Snowdrop comes full circle!We don’t think there is anything like Snowdrop in the country and it is such an important charity in this part of West Sussex.

Parents often write, even years after their child has finished their treatment, that they were so lucky to have had the support of Snowdrop when their child was ill. It continues to provide the vital nursing care at home for local children and it was founded 21 years ago. Originally it was launched in Walberton, in Chairman Di Levantine’s garden.

To start with the charity events etc were managed from her home office, and in 1996 a permanent office was found in a converted barn in West Stoke. This November a unit in The William Booker Yard in Walberton became vacant and the Snowdrop Trust took the opportunity to relocate the charity to the heart of this beautiful village. After 6 years running the office and so much more, Jo Rule decided it was also time for her to move on and Snowdrop bid her a fond farewell.

The people of Walberton have supported Snowdrop in so many ways over the years and we are delighted that the office is now more easily accessible.