Nursing care at home for local children with life-threatening or AUTUMN Newsletter terminal illnesses and 2017 support for their families

Photograph by Charles Waring Fantastic Turnout for Snowdrop's Arundel Park Sponsored Walk

Over 1000 people this year joined the The day is very special as it brings Langton who has been recognised by Sussex Snowdrop Trust Sponsored together all our Snowdrop Supporters, Spirit FM as being a Local Hero for leading walk at Arundel Park in May. Nurses, our Counsellor and our Snowdrop a group of supporters - ‘Unforgettables’ Families. Some walk in memory of their from Eastbourne to Eastergate – Wilkes It was a glorious day and a great loved ones, others sit and enjoy the food Head pub to raise money for the Trust. opportunity for all members of the family and refreshments on offer. Jenny and Gary Booker are one of our to get together. All generations enjoyed families that walk in memory of their the gentle walk across Arundel Park We hope next year you will join us for our son Toby. taking in the glorious views of the South extra special walk which will celebrate 25 Downs. The event is one of our important years since the charity was founded. fundraising events in the calendar. Amongst those pictured here are Matt

Stay up-to-date with stories and fundraising /snowdroptrust @SnowdropTrust Snowdrop Summer

2XS Wittering Nature’s Way Fundraising Paddle Race Events

We love to hear about the amazing ways you are raising money for the Sussex Snowdrop Trust. We can help promote your event through social media and share with other supporters. It never ceases to amaze Check-a-Trade Jailbreak us how generous you are with your time and how creative your ideas are in Worthing Pavilion Bowls fundraising. Jo’s Wingwalk You have made us part of your new challenge, or your school, work or #chopofthelocks, Hannah McIlwrath community fundraising event. We are so grateful for your contribution. There are so many wonderful photos to share… Please contact Lucy in the office if you are planning something. [email protected]

Kevin and Stacey’s Sky Dive Boots,

Russell’s Garden Centre Neil Houghton

Dance with Attitude Emma’s Baby Shower

Bennett and Game Chichester

Co-op Childcare, Littlehampton Charley Dummer Los Amigos

02 Colour Run 2017 Brighton

Known as ‘The Happiest 5k on the planet’, members of the team from the office, Snowdrop Mums, and supporters from Bennett and Game in Chichester took on the challenge at Brighton Marina. We all got totally immersed in coloured chalk paint and foam! Di Levantine, Co-Chair and Co-Founder was also interviewed by BBC Sunday Live Presenter, Mehren Baig about being one of the oldest people taking part. We would love for more supporters to join in next year and help us with fundraising. We will be in touch with plans in the new year…

Fashion Show at the Harbour Hotel in Chichester We had a glamorous event at the Harbour Hotel in Chichester in the form of a summer fashion show with House of Fraser, Andrew McDowall and the Wedding Boutique in Worthing. Thank you to all the businesses who contributed to our wish tree and the make-up artists from Decléor and Hair at 4 who made the models look so fabulous. It was lovely Gillian Keegan MP attended the event and she is keen to learn more about the work the Trust does. We were also pleased to be part of the Chichester Festival this year with a splendid concert at the Chichester Cathedral which featured the Southdowns Concert Band and the Walton Voices. Honeysuckle Weeks, one of our patron compered the evening. Please do join us for more wonderful fundraising events.

Honeysuckle

Weeks Gillian Keegan MP, Di Levantine, Mr Keegan

Walton Voices

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Family Days Out ‘‘ Our Snowdrop Families have to deal with so much each day so it is extra special when we can see families enjoying days out. The Trust have been able to provide ‘day outs’ at different theme parks for 80 families this year with the support of Check-a-Trade and other organisations. This is a wonderful‘‘ opportunity to create memories of happy times. One of our parents shares what the Sussex Evie and Elliot had an absolute blast and Snowdrop Trust means we were very lucky with the weather!

to them…. “Jane, our nurse is my ‘go to’ person for any issues or worries we may have. As a Snowdrop parent sometimes you feel you have to fight for everything to

make your child’s life easier but with Snowdrop’s support I know they will fight for us tooth and nail. For a long Edith had her first time time before we moved to the area I had ever on a roller coaster! ‘‘ no one. I felt so lonely and isolated. Snowdrop nurses are so special. ‘‘ Their care is genuine. The nurses are constantly thinking for you and go the extra mile. I have before phoned on Jane’s day off but she always answers. Nothing is too much trouble. If I see the other nurses in the street they will always stop to chat. That means a lot that they will always make time for us. Snowdrop nurses are so special. They are not just doing a job. It is like ‘‘ a vocation. They do it with genuine As you can see Ted has no compassion. They just get it. The fear and loved the fast rides. Counsellor has such a way that he will tap into our feelings and naturally be able to allow us to speak about our concerns. When we say we are fine. They know the signs that we are struggling. When Our unique Nurses ..... Toby has to face surgery I always feel Michelle Walker has been involved as a wobbly. The next thing we get is an Snowdrop Community Nurse for many years, unexpected drop in a for a chat and but she has recently left Snowdrop to become cup of tea. I don’t even have to ask. the Oncology Nurse Specialist at St Richards They know. The nurses understand the Hospital here in Chichester. Since being with us medical side but more importantly they she has married and had two super little boys, understand the human side. With Toby who are already‘‘ growing up so quickly. starting secondary school, Jane our nurse went into school and spoke with Snowdrop families over the years have the teachers about his condition. He has benefited from Michelle’s lovely and also very a very complex cardiac condition called professional manner which has given them Hypoplastic Left Heart Syndrome. For confidence and support that has made all the a school, it is daunting knowing how to difference to them, as their child went through deal with his condition. As parents we treatment and maybe operations. are probably more complacent about She will always be remembered by every child his needs. I don’t know exactly what and family that she worked with and when she she said to the school but when I went rang some of them recently to say she was in I was aware that she had emphasised leaving, there were tears. Jane Evans Snowdrop Team Lead the seriousness of Toby’s health and and Jennifer the warning signs should his condition We wish her well and deteriorate whilst at school. I am grateful know that she will Jennifer Barnes-Andrews joined the she carried out this visit because be keeping in touch Snowdrop Community Nursing Team we could not have had that same this year and has already been a with all of us at conversation. Both my boys are my rays Snowdrop and be wonderful addition to the Team and has been visiting and supporting many of sunshine. Toby is so positive. He will will be supporting Snowdrop families. say to me, “Mum, what are you doing some Snowdrop getting upset about me going for an op. children that will You are not the one having it and I am be helped by her fine about it. Don’t worry.” - Louise in her new role. Just knowing we have Snowdrop’s support empowers us each day. Michelle

04 Welcome to our Walberton Hub!

Thanks to Supersigns in Chichester who have transformed our hub with the most beautiful Snowdrop Wood Mural. This wallpaper was put up by their team in just a few hours. This transformation has enabled our families to benefit from using this room for counselling, away from a clinical environment. The Hub hosted an event supporter’s coffee morning where people came to share their stories of how they help Snowdrop and enjoyed coffee provided by our supporters, Edgcumbes Coffee Roasters. It was also chance for us to say how much we appreciate their support. We have also held our first Book and Puzzle Swap and Shop morning. Please come along to this on the first Thursday of the month from 10.30am to 12am. Join us for great coffee and chat. Another date for your diary is 16th November for our Christmas Shop at the hub. Like us on facebook and share our events. This helps spread our news and in turn raises our profile in the community whilst keeping you up to date with our activities.

Lodge of Union Donates £5,000 to The Sussex Snowdrop Trust

The Lodge of Union 38, a Freemasons Lodge meeting in Chichester have donated £5,000 to the Sussex Snowdrop Trust as a contribution towards their wonderful charity providing care at home for children with life threatening or terminal illnesses and support for their families. The Trust covers the coastal area from Havant to Littlehampton, north to Fernhurst and east to Billingshurst. Pictured below is W Bro Maarten White, the Worshipful Master, together with members of the Lodge of Union presenting the cheque to Diana Levantine. Diana Levantine from The Sussex Snowdrop Trust said: “It was an honour to be allowed to speak in such wonderful surroundings. It was a pleasure to meet so many dedicated masons and to hear about the generosity of their members to charities. We were fascinated to learn about the history and tradition of the Lodge. We are so thankful that their members chose a local charity, Sussex Snowdrop Trust where so many families in the area will benefit.”

05 Team Efforts in the Community

The community of Aldingbourne came together to raise funds through reviving a challenge set out 30 years ago by Mick Shone who devised a fundraising walk to help a girl who needed a major liver transplant. Mick ran the Chichester Police Volunteer Cadet Corp in 1980s and 90s. Four original Cadets pictured, Doug, Martin and Mark in the infamous yellow t-shirts decided to take on this challenge again led by Andy Kyte – 1000miles in 10days fundraising for the Aldingbourne School PTA and Sussex Snowdrop Trust. The distinctive yellow Mick’s March banner was displayed at many businesses showing their support in the county. Our thanks to all involved in the months of planning. RRT – Rapid Relief Team who are made up of volunteers from Plymouth Brethren Christian Church came along to provide much needed food and refreshments at the end of the challenge. They generously provided the food and donated all their takings to the Trust. The Unforgettables also teamed up for an incredible challenge of a Non Stop Walk from Eastbourne to Eastergate. The final destination was the Wilkes Head Pub. (The brainstorming venue for this team’s fundraising events) An immense amount of preparation is required with support vehicles and supplies to complete such as task. The team spirit in both of these teams was so evident. They shared so much in training and in the actual walk. Laughter and tears… We are so grateful for the funds you raise. Mick’s March received the Sports Achievement Award and Matt Langton, from the Unforgettables was awarded with the Charity Fundraiser of the year in the Spirit FM Local Hero Awards 2017. Congratulations!

06 Sleigh bells ring..... Who we are... Walking in a Winter Wonderland Diana Levantine Co-Chairman & Co-Founder Kevin Shepherd Co-Chairman

Valerie Seddon Vice Chairman & Trustee

Trustee James Tickell Joy Garbett

Patrons Clive Behagg Mary & David Bowerman CBE Hugh Dennis Lady Miranda Emmet Nick Herbert M.P. Rt Rev. Bishop Richard Moth (Bishop of Arundel & Brighton) Rt Rev. Dr Martin Warner (Bishop of Chichester) Honeysuckle Weeks

The Snowdrop Children’s Community Team Jane Evans Anna Jones Leanne Asling Rachel Moore Jennifer Barnes-Andrews Claire Dorey Come walk in the most magical Winter Wonderland at Russell’s Garden and Lifestyle Centre in on Sunday 26 November, 10am – 3pm. Phil Portway The event promises to get you in the Christmas spirit with a visit to Santa, Family Support Counsellor Mrs Claus and Elsie, the Elf will be on hand in the grotto, as well as two of T: 01243 793617 the magical sleigh-pullers. Adding festive cheer will be local choirs, a Grand Raffle and magic shows with everyone’s favourite magician, Nick Clark. Helen Crosby Family Volunteer Co-ordinator There is no advance booking required for visiting Santa to receive a gift in T: 01243 793622 his grotto. Entry is £5.00 per child with all proceeds going directly to The Sussex Snowdrop Trust. There is no charge for accompanying adults or babies under a year old. Karen Spencer Team Administrator Nick Clark’s magic show will take place at 11am and 12.30pm. There is no T: 01243 793619 charge for the show, or for meeting and feeding the reindeer, but donations to The Sussex Snowdrop Trust are welcome. The Westhampnett Centre Find more information about Santa & Antlers call 01243 512525. Due to 28-29 Westhampnett Road space restrictions and for reasons of safety and comfort buggies and Chichester, prams cannot be accommodated in the grotto, but babes-in-arms are very PO19 7HH welcome. T: 01243 793619 Restaurant bookings are strongly advised for the 26 November. Registered Charity Address Call 01243 511156 to reserve Unit 3 The William Booker Yard, The Street, your table. Walberton, West Sussex BN18 0PF T: 01243 572433 Bring your children, the grandchildren E: [email protected] and make a day of it! W: www.thesussexsnowdroptrust.com Registered Charity No. 1096622 Limited Company No. 4557686 (Limited by Guarantee) 07 Call to Action! This is not a request for money . . . it’s simply a request to confirm your contact details - although all donations to The Sussex Snowdrop Trust however big or small are always gratefully received!

The Sussex Snowdrop Trust aims to (and changing its name to The General We have been together so long... give support to the whole family to Data Protection Regulations 2018) in enable them to cope with the day to order to give everyone more control day challenges where a child with a over who holds information on them. life-threatening or terminal illness is We can only let you know what’s going We don’t want to lose you now... involved. on if you complete the form overleaf There are amazing stories and exciting and send it back to us – or if you events we would like to share with complete it online. you about our work in Sussex and the It’s so easy for you to do. You may be aware that Data Protection regulations families we support. But we are unable Please, please just fill in the form to do so unless you fill in the form overleaf and send it back to us (in the require organisations to seek permission to hold your overleaf! freepost envelope provided) . . . The Government is revising and we’re sure it will take you less than contact information. updating the 1988 Data Protection Act 1 minute! As a result Sussex Snowdrop Trust must have your consent to continue to communicate with you. We want to make sure all our supporters can be kept informed of future events and news. It is really important for you to let us know Nursing care at home for local children with if you wish to continue to receive information from us. life-threatening or terminal illnesses Here is how; and support for their families It’s easy Please complete the Form Step 1. Fill out the information on the slip inside this newsletter Overleaf Step 2. Put it in the pre-paid envelope provided Step 3. Put in the post Alternatively. visit: thesussexsnowdroptrust.com/contact and complete your details in the Opt In section. JOB DONE! - WE CAN NOW STAY IN TOUCH. Thank You - We don't want to lose touch 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