Newsletterspring | 2015

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

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SPRING 2015

Newsletter

Trekking the Te Araroa Trail for Snowdrop

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

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
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

and is, without

money for The

Sussex Snowdrop Trust.

Quinn was a lively little guy who loved to kick

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

“

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

a football around, he enjoyed watching ‘Antz’, pointing at birds in the sky or saying “hello” to passing dogs and was

landscapes continue to amaze me.

sandﬂy bites. I've had mice crawl over me

always smiling

in the middle of the night and had

”

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. 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.

Continues on page 2

In this Issue

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

Issey's Journey

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.

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

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.

Chi Students & Snow White

Thankfully 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.

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.
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.

Joss Smales

Stay up-to-date with stories and fundraising

/snowdroptrust

@SnowdropTrust

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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.

Procession of Princesses

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.

Date for your Diary • Snowdrop Arundel Charity Walk - Sunday 10^thMay

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Thank you!

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.

The Charity Ball

Putting on the Glitz

Snowdrop 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.

INDIVIDUAL/ORGANISATION DONATIONS

Liz Watson (Cream Teas)

£212.00 £329.00 £116.80
£24.58
£291.68
£24.91
£106.56 £217.80
£70.28
£350.00 £100.00 £694.57
£94.64
£1800.35
£600.00 £500.00 £100.00 £500.00 £200.00 £206.05 £146.00 £500.00 £525.00 £500.00 £885.05 £109.06 £256.31
£40.00

Waitrose (Green Tokens) Chichester Witterings & District Bowls Club Crablands Bowling Club Selsey Chris Withall (Knitted Chicks)

Prince of Wales Pub – Bognor (Tin) Jewels Stables – Charity Day

Littlehampton Freewheelers Norfolk Gardens (Fred Strong) Ladies Bowls League Presentation Yorkshire Building Society White Stuff Foundation Walberton & Binsted School Friends of Sussex Hospices Arundel Players (24hr Musical) Midhurst Lions Companions of Selsey Chapter Bognor Regis Lions Club Martlets Bridge Club West Wittering Horticultural Society Chantry House Oak Palmers Brewery Aspects Beauty (Fun Day) Chichester Cathedral Tanbridge House School East Wittering Church Hennings Wines

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.

Charity Week At Bishop Luffa School

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

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

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

VRC Fellowship – East Wittering

St Phillip Howard School Fund St Marys R/C Bognor Regis School Fund St Richards R/C School Chichester St Philips Catholic Primary School Arundel £1085.00 The Rotary Club of Littlehampton Pagham Parish Council Arundel Gardens Association

Chichester Uni – Student Concert

The Inglenook, Pagham

£676.63 £200.00 £330.10

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.

£1000.00
£100.00
£50.00
£147.90 £126.08
£20.00

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”.

Mr & Mrs Woodward 3rd Chichester Guide Account West Sussex Travel Society Charity

Walberton School – Nativity Play

Chichester Camera Club Mundham House School Cake Sale Stage Door Theatre Co. West Meads Arts & Craft Group Pagham & District Residents Assc.

Personnel Selection – Bognor Regis

Shani Lilley Ballet Troupe Blackbush Shoot

£76.00
£1000.00
£173.40 £220.00 £469.24 £160.00 £500.00 £100.00 £200.00 £249.00 £270.00
£20.25

St Richards School Pilgrim Court Social Club Wisborough Green School Rumboldswhyke CE School Pendean House Nursing Home Sunday School of St James The Gym Academy The Kings Arms, Arundel Waitrose Community Fund The Get Together Club Singleton & East Dean W.I.

QE2 Public House – Bognor

Law South Group Limited Wayfarers Lodge No. 7995

Quilters Guild – Region 2 Jewsons – Bognor Regis

The Octagon Garden Club

£108.00
£62.50
£153.30
£95.00

Walberton Concert

The 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.

£45.00
£182.56 £450.43 £321.00 £324.53
£30.00
£115.67 £108.08 £200.00
£14.97

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

£80.52
£112.54

To help us reduce our postage costs and send our Newsletters to you via email please contact us at [email protected] Thank you.

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@

Our Second Literary Lunch

Chair's Report

The 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.
Over 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.

Wine and Chilgrove Gin

Hennings 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.

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.
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.
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.
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.

Snowdrop Children's Party

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

It 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.

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.
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.
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.
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.
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!

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 Windfall

When 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 Snowdrop

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

about the work of Snowdrop, they were so moved that they demanded a bucket to be produced for donations.

Chichester 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:

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

donations

”

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Who we are...

Our first Snowdrop

Diana Levantine

Patrons are announced!

Chairman, Co-Founder & (unsalaried) Charity Director

Valerie Seddon

Vice Chairman & Trustee

Hugh Dennis Comedian, Actor, Author and TV Presenter

Trustees

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.

Sally Austin Helen Court Oli Hicklin Deirdre Hoggarth Richard Jordan

Patrons

Clive Behagg Mary & David Bowerman CBE Hugh Dennis

Mary and David Bowerman CBE

Dr. Martin Warner

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.

Registered Charity Address

Unit 3 The William Booker Yard, The Street, Walberton, West Sussex BN18 0PF T: 01243 572433 E: [email protected] W: www.thesussexsnowdroptrust.com

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.

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

Professor Clive Behagg

The Snowdrop Care at Home team

The Westhampnett Centre 28-29 Westhampnett Road Chichester, West Sussex PO19 7HH

Vice-Chancellor of Chichester University

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

T: 01243 793619

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.

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

A Fond Farewell

Margaret 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.

Our New Trustee

Busy 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!

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Sunday 17th May

Bognor 10K Run (approx 50 runners for Snowdrop)