Newsletter SPRING | 2015

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

In this IssueIssey’s Journey - Page 2 • A Windfall for Snowdrop - Page 6 • Our first Patrons announced - Page 7

As I write this I'm sitting in the kitchen of a campsite in Twizel, a small town near the centre of the South Island in New Zealand. Yesterday fellow hiker Rob and myself walked 40 kilometres (25 miles) in the hot sun around Lake Pukaki with its glorious sky-blue water reflecting the majestic snow covered peak of Mount Cook, the highest mountain in New Zealand. I've been walking the Te Araroa now for almost four and a half months and the stunning

vistas and beautiful, varied landscapes continue to

amaze me.

Whenever I tell other hikers or people here who are familiar with the Te Araroa that this is my first ever hike it always illicits the same response - which is to look at me like I'm crazy. It's an incredibly physical and mentally demanding trail and is, without doubt, the hardest challenge I've ever undertaken. I've suffered many blisters, aching feet, back pain, knee pain, shoulder pain, wasp stings,

mosquito and sandfly bites. I've had mice crawl over me

in the middle of the night and had a rat get into my backpack and eat my porridge. I've waded through rivers and mud, had shocks from electric fences, climbed mountains in the pouring rain (leaving me with wet clothes the next day) and fallen or slipped over countless times.

So why spend the best part of six months putting myself through this? Well, despite the difficulties I've pretty much loved almost every minute of it. However, my main motivation, since the early stages of planning this adventure

has been to raise money for The Sussex Snowdrop Trust.

It is almost 5 years ago since my nephew, Quinn Mills, passed away after being diagnosed at the age of 11 months with a rare type of (rhabdoid) kidney cancer. Quinn was a lively little

guy who loved to kick a football around, he enjoyed watching 'Antz', pointing at birds in the sky or saying ‘hello’ to passing dogs and was always smiling.

Continues on page 2

Trekking the Te Araroa Trail for Snowdrop

“ Quinn was a lively little guy who loved to kick a football around, he enjoyed watching ‘Antz’, pointing at birds in the sky or saying “hello” to passing dogs and was always smiling”

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Little Issey Riley has been undergoing treatment for an aggressive type of brain tumour for 18 months and she has just been given the all clear.

Isseys parents had no idea that her condition was so serious , she was just, as she said her poem – feeling dizzy.

They thought she had vertigo, but sadly once she had had a MRI scan, the tumour was evident. An operation to remove the tumour was performed at the Southampton Hospital and was followed by life-saving chemo and radiotherapy treatments.

Issey's Journey

/snowdroptrust @SnowdropTrustStay up-to-date with stories and fundraising

He bravely endured six months of treatment undergoing, surgery, chemotherapy and radiotherapy before he died. I miss my little nephew and wish, more than anything, that he was still with us.

The Sussex Snowdrop Trust were an invaluable help to Quinn and our family during the difficult last months of his life. Snowdrop nurses visited several times a day, administered drugs to Quinn and also very sensitively provided practical and emotional support for our family. We will always be grateful for the help of this amazing charity.

With about a month left of this journey I still have many exciting mountain ranges to climb, forests to explore and rivers to cross, after which I'm very much looking forward to returning home to see my family and friends and to share some of the stories of this fantastic experience. I also hope that the money raised will help Snowdrop to continue their brilliant work in providing support and nursing care for children with life-threatening and terminal illness.

Joss Smales

There once was a girl called Issey

Who often got very dizzy

They found she had a tumour

on her brainWhich often caused her lo

ts of pain

But alongside the tumour

Issey got lots of fame

Which made her happy and

back in the game again

Issey Gets Dizzy

By Issey

Chi Students & Snow WhiteThankfully there wasn't a poison apple in sight as guests tucked into a delicious meal at the Chichester College Restaurant cooked by chefs and trainees keen to hone their culinary skills.

Massoma Ali and her fellow student Corrine, created an intimate and friendly atmosphere - and all in aid of our Snowdrop children.

Central to the themed evening was a magnificent painting of Snowdrop White which was auctioned to raise extra funds.

We are waiting to hear from Massoma the final count but we want to thank her and everyone involved for their efforts - every penny counts.

03Date for your Diary • Snowdrop Arundel Charity Walk - Sunday 10th May

Snowdrop nurses helped Issey and her family throughout the following year, which saved many visits to hospital and today she is looking forward to her hair growing and growing and eventually she hopes it will reach her bottom!

Issey received the Bravery Award at the Spirit FM Heroes ceremony last year and she loved every minute of it.

At 9 a.m. on a misty and cold Saturday morning outside Chichester Cathedral, 135 princesses turned up in an attempt to break the world record for a gathering of princesses. Although the world record wasn't broken everyone was very happy and the princesses paraded from the Cathedral green to the County Hall car park in West Street where they were greeted by an Elsa lookalike from the very popular film ‘Frozen’.

Two to 40 year olds who love being dressed up, skipped and twirled in their pretty dresses. A few brave fathers looked very glamorous in their frocks too. The tiaras, wigs and boots added to the special look!

Thank you to Chris Allwood for organising the event and also to Dawn at Salon du Chocolat for donating 170 large white chocolate snowflakes which she made especially for the Princesses.

Procession of Princesses

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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.

INDIVIDUAL/ORGANISATION DONATIONSLiz Watson (Cream Teas) £212.00 Waitrose (Green Tokens) Chichester £329.00 Witterings & District Bowls Club £116.80 Crablands Bowling Club Selsey £24.58 Chris Withall (Knitted Chicks) £291.68 Prince of Wales Pub – Bognor (Tin) £24.91 Jewels Stables – Charity Day £106.56 Littlehampton Freewheelers £217.80 Norfolk Gardens (Fred Strong) £70.28 Ladies Bowls League Presentation £350.00 Yorkshire Building Society £100.00 White Stuff Foundation £694.57 Walberton & Binsted School £94.64 Friends of Sussex Hospices £1800.35 Arundel Players (24hr Musical) £600.00 Midhurst Lions £500.00 Companions of Selsey Chapter £100.00 Bognor Regis Lions Club £500.00 Martlets Bridge Club £200.00 West Wittering Horticultural Society £206.05 Chantry House Oak £146.00 Palmers Brewery £500.00 Aspects Beauty (Fun Day) £525.00 Chichester Cathedral £500.00 Tanbridge House School £885.05 East Wittering Church £109.06 Hennings Wines £256.31 VRC Fellowship – East Wittering £40.00 St Phillip Howard School Fund £676.63 St Marys R/C Bognor Regis School Fund £200.00 St Richards R/C School Chichester £330.10 St Philips Catholic Primary School Arundel £1085.00 The Rotary Club of Littlehampton £1000.00 Pagham Parish Council £100.00 Arundel Gardens Association £50.00 Chichester Uni – Student Concert £147.90 The Inglenook, Pagham £126.08 Mr & Mrs Woodward £20.00 3rd Chichester Guide Account £76.00 West Sussex Travel Society Charity £1000.00 Walberton School – Nativity Play £173.40 Chichester Camera Club £220.00 Mundham House School Cake Sale £469.24 Stage Door Theatre Co. £160.00 West Meads Arts & Craft Group £500.00 Pagham & District Residents Assc. £100.00 Personnel Selection – Bognor Regis £200.00 Shani Lilley Ballet Troupe £249.00 Blackbush Shoot £270.00 St Richards School £20.25 Pilgrim Court Social Club £108.00 Wisborough Green School £62.50 Rumboldswhyke CE School £153.30 Pendean House Nursing Home £95.00 Sunday School of St James £45.00 The Gym Academy £182.56 The Kings Arms, Arundel £450.43 Waitrose Community Fund £321.00 The Get Together Club £324.53 Singleton & East Dean W.I. £30.00 QE2 Public House – Bognor £115.67 Law South Group Limited £108.08 Wayfarers Lodge No. 7995 £200.00 Quilters Guild – Region 2 £14.97 Jewsons – Bognor Regis £80.52 The Octagon Garden Club £112.54

To help us reduce our postage costs and send our Newsletters to you via email please contact us at info@thesussexsnowdroptrust.com Thank you.@

The Charity Ball Putting on the GlitzSnowdrop and the Hilton Community Foundation Annual Charity Ball was once again a fantastic success, raising over £14,000 which was shared by the two charities.

Men with black ties and ladies in sequins and jewels, danced the night away to the best band we have ever had and a great time was had by all. The raffle, auction and table games all helped to raise money for the charities and we so grateful to the many generous supporters who gave auction and raffle prizes.

Walberton ConcertThe Full House Quintet played to a packed hall and they were everything you could wish for - amusing, brilliant and with tiny Alison Woodward on the bassoon, it was the perfect combination. Alison's sister-in-law Laura Napier Burrows sang her own take on well-known songs and she ended the evening with a beautiful version of Silent Night.

The evening raised a vital and much needed £796.50 for Snowdrop, thanks to so many helpers, the musicians and of course the audience.

Thank you!

Charity Week At Bishop Luffa School Our great friends and supporters at Bishop Luffa school in Chichester have done us proud!!

We can't begin to say what their support means to us here at Snowdrop. To have Bishop Luffa, one of the most respected, local schools supporting us again is fantastic.

March saw Charity week in schools and for the first time Bishop Luffa was one of the 1,000 schools who took part in the ninth annual BBC School Report News Day.

After one of the many filmed interviews, during which students asked very thoughtful questions about Snowdrop, the children we help and what funds raised during the week will be spent on, a student remarked that he hadn't realised the depth of help the charity gave. “It's a great charity” he said, “I am really glad we are supporting it”.

School Reporters had to finish their stories by a 14:00 GMT deadline - and get them online by 16:00.

There was a buzz throughout the school as this deadline crept up!

You can find reports from Bishop Luffa School here in Chichester who were taking part in this year's BBC School Report at www.bishopluffa.org.uk/bbc-school-report/

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Snowdrop Children's PartyIt might sound like old news when we mention the Children's Christmas Party but it is the highlight of our year when over 200 partigoers - 'Snowdrop children', their brothers, sisters and parents attend the Snowdrop party at Butlins.

Snowdrop volunteers always work incredibly hard to transform one of the meeting rooms into a magical Christmas Grotto where each child meets Father Christmas and also receives a personal gift from the man himself! This year Butlins' chef and his team provided a delicious lunch and even a birthday cake for one of the children who was celebrating his birthday on the day.

Every child chose a present from toys that were given to them by generous Spirit FM listeners and also the Rocking Horse Appeal.

Froggles kept the children entertained and every family was given a special photograph taken by Stephen Walby and printed by Liz, so that they could be taken home. These photos provide a lovely memory for families and are really treasured.

Thank you to all the staff at Butlins that helped us with the party and we are already looking forward to the next one planned for November. We are having a Cinderella panto and theme this year for the party, so children can dress up if they want to!

Wine and Chilgrove GinHennings the wine shop in North Street, Chichester offered their customers the chance to taste the new Chilgrove Dry Gin, which only became available in the summer of 2014 and is already in demand in outlets, restaurants and bars in London and here in the South.

Created under eighth generation Master Distiller Charles Maxwell, it is made of 11 botanicals from a base of neutral spirit distilled from grapes, rather than cereal, which gives it a unique smooth taste.

Charging only £4 a glass for this highly acclaimed gin, the founders of Chilgrove Gin, Christopher and Celia Beaumont-Hutchings raised over £260 for Snowdrop with the support of Matthew Hennings and Manager Stephanie Aburrow. Between them they organised a fabulous evening.

Thanks to them all, the shop was heaving with customers more than happy to become acquainted with their new favourite tipple!

Go to www.chilgrovegin.com to discover more about Chilgrove Dry Gin.

Our Second Literary LunchThe international and local author Kate Mosse gave a fascinating and entertaining talk at our 2nd Literary Lunch at the Hilton Avisford Park Hotel.

Kate has sold over 4 million books and in her lively and unassuming way, she enchanted the audience with stories of her life and writing career and also introduced us to her latest novel, The Taxidermist’s Daughter. Queues formed to buy her book and she happily signed them all. We can’t thank her enough for giving up her time to come to one of our very successful lunches.

Chair's ReportOver the years since we founded Snowdrop the needs of families have become more demanding as children leave hospital so much earlier nowadays after operations, and they are also able to be at home throughout some treatments such as going daily to Southampton hospital for up to 7 weeks of radiotherapy. Children with a tracheostomy are cared for at home by their parents instead of having to stay in hospital. Thank goodness.

The Snowdrop nurses have been busier and busier and the Trustees and I approved the appointment of another Children’s Community Nurse to join our exceptional Care at Home Team.

Jane Evans was our first Snowdrop CCN and she has led the team since she joined Snowdrop in 2001. As the team has grown so have her responsibilities so CCN Michelle Walker and Snowdrop Counsellor Phil Portway now share some of these.

Financially we have been blessed by many generous donations but we are mindful that with new staff comes the need to raise even more funds. However, the support our Team provides is crucial for Snowdrop families. A Snowdrop mother told me that when she was in Southampton Hospital with her son who is undergoing intensive treatment for cancer, another parent asked her where she lived. “The only silver lining about all of this” she said, “is that there is a charity called Snowdrop in your area and their team of Community nurses are wonderful. I wish I lived where you do.” The Snowdrop mother had known about Snowdrop for years but not really what we do.

So what does community care involve? What exactly is Snowdrop ???

Our team visit children in their homes and enable parents to care for their child and they support them in any way that will help them cope. Unless you need Snowdrop you don’t know what you need or what is available.

Most adults who are seriously ill want to be cared for at home– so do children.

Please help us to continue raising our profile which in turn will encourage people to support us.

Di Levantine Chairman and Co-Founder CEO (Unsalaried)

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Chocolate!The incredibly generous Dawn Shrives at Le Salon du Chocolat has given Snowdrop many delicious raffle prizes. This has included hundreds of handmade chocolates for our children’s party, special chocolate snowflakes for the Princesses Procession and a chocolate experience at her studios in Spitalfield Road, Chichester for 3 Snowdrop Families.

To find out more about these fantastic chocolate extravaganza experiences visit the website to see what is on offer. The chocolate literally pours from the taps – and is ready for all of your chocolatey creations!

www.lesalonduchocolat.co.uk

The Cherries WindfallWhen the Cherries (the NHS children’s respite home in Chichester) finally shut its’ doors for the last time, the Association had to close its accounts and donate the money raised to another charity. They agreed unanimously to give Snowdrop these funds.

Friends and families of children who had been cared for at The Cherries had been raising money to enhance the gardens and buy other pieces of equipment for the children and they were all devastated when the respite care home was closed.

Over the years, Snowdrop and The Cherries have been close friends and the staff are well known to each other. It was at a special reunion of staff and members of The Cherries Association (Maggie Collins, Jean Goodson, Lynn Smith and Rose Watt and some of The Snowdrop Care at Home Team: Michele Walker, Phil Portway, Gill Cunningham and Diana Levantine) that Snowdrop received an astonishing cheque for £47,455.62.

Many years ago, a generous benefactor wanted a project in memory of his wife Lucy Platt, so with money given by him and raised by Snowdrop and CCC (Chichester Children’s Charity), a suite of rooms were built where very frail children could be nursed and also a parent could stay. These rooms gave many, many children the chance to be nursed with dignity and special care over the past 12 years.

Yacht Club Motor Section fuels support for SnowdropChichester Yacht Club held its second Charity Ball, in aid of Snowdrop. Members of the Club and their guests raised over £3,000 for us. The Rear Commodore of the Motor Section of the Yacht Club, Heather Baker and Claire Armstrong, the Social Secretary said:

“We were delighted to raise so much money for this very worthwhile local cause. When people heard Diana speak

about the work of Snowdrop, they were so moved that they demanded a bucket to be produced for donations. This meant that we were able to add quite a lot more money to that raised by the auction and by the table quiz.

Snowdrop is so grateful for this amazing gift. The outcome was definitely helped along by the auctioneers who did a sterling job.

“ When people heard Diana speak about the work of Snowdrop, they were so moved that they demanded a bucket to be produced for donations”

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

Valerie Seddon Vice Chairman & Trustee

Trustees Sally Austin Helen Court Oli Hicklin Deirdre Hoggarth Richard Jordan

Patrons Clive Behagg Mary & David Bowerman CBE Hugh Dennis Dr. Martin Warner

Registered Charity Address Unit 3 The William Booker Yard, The Street, Walberton, West Sussex BN18 0PF T: 01243 572433 E: info@thesussexsnowdroptrust.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 793619

Mary and David Bowerman CBE

Supporters of Snowdrop over many years who have allowed us to use their Concert Hall (Music Room) at Champs Hill for 4 magical concerts and they have always encouraged our work. David said that they agreed to be Patrons because they know that the ethos of Snowdrop is absolutely right. Children should be at home and the care the nurses and team give is wonderful.

Professor Clive Behagg Vice-Chancellor of Chichester University

Clive heads the very successful and internationally acclaimed University, which is situated in Chichester and Bognor.

Staff and students have raised awareness and funds for Snowdrop with concerts and events. Clive said he was honoured to be asked to join Snowdrop.

Hugh Dennis Comedian, Actor, Author and TV Presenter

Hugh lives near Chichester with his wife and two children. He has great sympathy for the Snowdrop families and was very happy to accept the role of Patron and if work permits he will try to join us at our events.

The Bishop of Chichester Dr Martin Warner

Bishop Martin also accepted our invitation to become a Patron and although he has many demands on his time, he will support us in anyway he can. He has also given us permission to use the Bishops Palace or Garden for an event.

Welcome to Our New TrusteeBusy local radio Managing Director Sally Austin has already attended several Trustee meetings in her role as one of our very dedicated Board. Sally has been at Spirit FM for over 13 years and has always been a huge supporter of Snowdrop. She lives in Lavant with her daughter and slightly crossed eyed labrador called Fudge!

Our first Snowdrop Patrons are announced!

A Fond FarewellMargaret Eva OBE resigned as a Trustee last year after seeing us through 4 years of change within the Trust. She brought to the board her vast experience in so many areas and we always appreciated her contribution, enthusiasm and encouragement. She joined Snowdrop when she was Headteacher of the Bourne Community College and although she was extremely busy, she always had time for Snowdrop.

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The charity depends on the generous support of the community – schools, clubs, church groups, trusts, organisations and individuals. Every penny is appreciated and enables Snowdrop to be able to continue to provide vital help to children and families across Sussex.

Donate via Text Make a donation by text message from your mobile phone. Just text snow22 followed by a space then the amount that you would like to donate to 70070 For example, to donate £10 send snow22 £10 to 70070

Donate Online Visit our website www.thesussexsnowdroptrust.com and click ‘Make a Donation’.

Donate Monthly Please fill out the Standing Order Form and return it to us.

Donate by ChequePlease fill out the Donation Form and return it to us.

Friday 24th April - 12 noon Literary Lunch at The Hilton with Peter James

Sunday 26th April London Marathon For the first time we have been allocated 5 places!

Sunday 10th May - 1 – 3pm Snowdrop Arundel Walk

Thank You

Why not become our Facebook friend too, and share your stories, ideas and fundraising experiences with us?

Your donation really does make a difference

Donation Form

Standing Order FormYOUR BANK DETAILS

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, The Street, Walberton, West Sussex BN18 0PF.

Please send to: The Sussex Snowdrop Trust, Unit 3 The William Booker Yard, The Street, Walberton, West Sussex BN18 0PF.

To: Lloyds TSB Bank Ltd, East Street, Chichester, West Sussex PO19 1HJ Sort Code: 30 - 91 - 97 Account No: 02271507

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Snowdrop is an incredible charity, but it’s

so much more than that. They have been

there for the last 4 years since our son

became ill, thank you xx

We will always be grateful for the help and support given to Toby and our family. All involved gave 110%, especially the Snowdrop nurses who were amazing and made such a huge difference to Toby’s quality of life, we will never forget you. Thank you from his NanNan and family

Snowdrop Events 2015

Sunday 17th May Bognor 10K Run (approx 50 runners for Snowdrop)

Friday 22nd – Monday 25 May Pagham Church Flower Festival

Sunday 14th June - 1 – 5pm Walberton Open Gardens (to raise funds for St Marys Church and Snowdrop)

Saturday 11th July Concert Chichester Baptist Church Alison Woodward and Chris Cootes

Saturday 28th November The Glitter Ball at the Hilton

Friday 4th December - 7.30pm Champs Hill Concert

For details of each event please visit www.thesussexsnowdroptrust.com