Nursing care at home for local children with life-threatening or Newsletter SUMMER terminal illnesses and 2018 support for their families

Snowy with sister Posy’ who is a great support and so much fun. Sisterly Love The Snowdrop Trust currently Snowy, aged five years old was with the management of treatment and support over 72 families in , diagnosed in September 2017 with the continuous checking in and out of bringing vital nursing support for local Rhabdomyosarcoma, a rare cancer that hospital, combined with the emotional children with life threatening or terminal affects 4 in a million children. Snowy has management of what had happened, illnesses. All referrals come to the undergone chemotherapy and has recently life does change. The Snowdrop nurses Snowdrop Community Nursing team been to America to have Proton Beam helped to soften this disruption. They from the professionals involved in their therapy. Her Dad, Mikey, describes how became part of our team and immediately case. the Sussex Snowdrop Trust has helped formed great relationships with both the family so far; our girls. They were always flexible and We have recently been touched by the understanding, working at home with story of one little girl. Named Snowdrop, “We did our very best to keep life as us or in school on the days Snowy was known as Snowy. normal as possible but the reality is, Continued overleaf

Stay up-to-date with stories and fundraising /snowdroptrust @SnowdropTrust The Snowdrop nurses helped to soften this disruption. They became part of our team and immediately formed great attending. Now we have reached the end relationships with both our girls. of treatment, we are finding much more flow in what we do. Snowy is back at day of treatment as a strategy to get important to us as a family. We found school full time and loving every minute.” me through the wreckage that our life strength in numbers. As we move on, had suddenly become. I completed an I think it is right that we continue to Through this difficult and anxious time, Olympic Triathlon to find closure and fundraise to ensure that other families the parents have pulled together friends physically and mentally prepare myself receive the support that we were and family to raise awareness about for the fight ahead. I planned on doing a lucky enough to get from The Sussex Snowy’s condition and raise vital funds for few that week to get me set, but it just Snowdrop Trust.” charities that have supported them. Mikey rolled on day by day. After a few weeks, describes how the campaign developed We are lucky to have had many Snowdrop I realised that if I kept going, we could over time; families who help raise funds and build a campaign that would help others awareness of the work of the Trust. “The TriEveryDay4Snowy campaign in the future. I think the positivity that This is just one of the stories which evolved into something which we are spread through so many people joining have highlighted the special care that so pleased with. It started on the first the challenge in their various ways, was Snowdrop provides. Counsellor makes a difference Phil Portway Snowdrop Counsellor MBACP Accredited Dip Psychodynamic Counselling, Dip Sandplay Therapy, Dip Neurolinguistic Programming.

Phil is a fun character and always has Often parents being faced with such a smile on his face whilst playing with news, will spend time in hospital initially the Snowdrop children and their siblings for long periods in Southampton or in when out on some of our outings. London. This is a time where parents remain with their child at all times. Phil is there for our Snowdrop families, whether it is support for grandparents, Phil explains, “I used to see some of my parents, brothers or sisters or the child patients at their own home, but I quickly being treated. realised that my work was more effective Behind that smile, there is a mind full when that person was away from that of traumatic, sad and anxious stories environment. Away from the distractions imparted from those who have needed to in a house and where they can focus in a share their thoughts and worries. counselling room. “ When a child is diagnosed with a life One of the techniques that Phil threatening or terminal illness, Phil will practices is ‘Sandplay Therapy’. A visit the family with one of our paediatric sand tray is placed on the floor and community nurses and explain that he he will encourage the patient to select is there to talk to when they are ready. different figures from a shelf but then

02 gives no further instructions. A patient who was supported by The next time we met I finally let go and This method is used to the Trust recalls his relationship broke down, all the months of fear and facilitate the healing and with our Counsellor, Phil. sadness I had been supressing finally transformation came out and I felt a feeling of huge relief. by exploring “I initially had my first counselling It was ok to be scared and have fear, to conflicts from when my children were very ill. be able to face things rather than trying the unconscious It was something that was to hide or ignore them. I no longer felt so mind in a symbolic form and put to me and suggested lost and helpless, I had someone there to allows a healthy re ordering on a number of help and guide me, pick me up everytime of psychological contents. occasions by The Snowdrop community I fell, help make the darkest of days clear. No analysis is made with nurse and my then wife who was having Nothing was ever too much trouble, the patient until after the counselling, but I kept refusing the whether it was visiting me when I had to process is complete. Phil will then talk to suggestion as I felt it wasn’t for me, stay with my children in hospital many them about their choices. A story is then maybe it was fear too. miles away, feeling alone and despairing. revealed that can he can work through. It really was a lifeline. A child may divide the sand tray in two with a piece of solid wood. This could When my children passed away after a describe the need to define good days long illness he was there for me and a and bad days. Placed in the good day huge support. area, maybe balls and fluffy animals I truly believe I would not have survived which represent playful, happy times. those times without him, I had anger, In contrast, on the bad day area, other heartache, loss and was very lonely. He figures may be chosen which depict was there to help me make sense of their unconscious mind. A bridge, as a things, guide me and slowly help me to symbol, could be the move on and try and rebuild my life. link to bring these feelings together, so But as my situation worsened with my He helped me to remember my children more days become children deteriorating on a daily basis. with love and happiness rather than pain, happy days and bad I finally agreed to meet Phil. heartache and suffering and has given days seem less As it turned out it was the best decision me hope. I know things will never be the daunting. Phil will I had ever made. same with such a massive void in my life assist the child but he has helped me realise the things in expressing He came to visit me at my home and I I do have and that I can be happy again their feelings. remember vividly having emotions come and love again. “ to the surface. Another Our nurses continue to be the shining I was giving my son morphine through a technique is light to our families. One mother wrote to using ‘A Huge the Trust after her daughter died. Bag of Worries’ I truly believe I would “The Snowdrop nurses were the best book. One story he uses is about a child not have survived those nurses we met over the whole year, the with a big bag which is laden down kindness and dedication they showed us, with heavy worries. This bag is dragged times without him, I had we will remember forever. My daughter around the place and is not getting any said this and she was a good judge lighter. It is getting too hard to carry for anger, heartache, loss of character. Our daughter is in our just one person. The child speaks with and was very lonely. He thoughts every second, she was the most a friend and the bag becomes a little wonderful girl and we were so lucky to lighter but it is still heavy. The child tries was there to help me have her. Most evenings we discuss how to speak to his dad but he is too busy terrible it could have been, her last days caring for his sick sister. The big bag make sense of things, and her peace of mind. Without you, we goes everywhere with that small child. guide me and slowly would never have been able to achieve a The child is exhausted and the bag sits peaceful family death at home. If nothing by his side. Until one day, a kind lady help me to move on and else, we have the comfort that she passed sees the big bag and sits with child and away thinking she was getting better, the starts taking some of the worries out. try and rebuild my life. hospital visits were over and she was She sorts them all into piles and they home for good. Somewhere she loved to deal with them one by one until all the be- without you we could not have done gastrostomy when he arrived. Something worries are thrown away. Now the bag is it. Thank you seems so inadequate but it I had been doing everyday for many empty. is all we can say.” months, by this time, without really The Counsellor’s work can vary thinking about it. I was ignoring the pain The Trust’s work enables families to cope enormously in terms of timelines. and heartache I was feeling and that with the everyday challenges they face had been building up. But at this first with a child who has a life threatening or He maybe needed immediately for a meeting, he just got me talking. terminal illness. This is achieved through traumatic end of life situation or when I remember just wanting to cry as I got nursing care at home, support with a child has a fear of needles or, for talking about what I was doing and attending school, family support workers others, his support is required for much other things starting to be brought up taking children and siblings out to give longer. Phil has a natural rapport with his but I remember fighting it and holding it respite to parents. Our Counsellor, Phil patients. For some it can take a long time together while he was there. is there to talk through families’ anxieties to understand how he can help. also and any other issues.

03 25th Anniversary year

There has been many wonderful events in the County for The Sussex Snowdrop Trust special 25th Anniversary. The opening of the Snowdrop Garden at Mitchmere Farm was a real joy. The weather had been unpredictable leading up to the event but the garden looked truly stunning. Visitors came in their 100’s to see this delicate, milky, teardrop flower. All ages enjoyed the event with homemade cakes and a craft stall. There was even a treasure hunt quiz for children to help them explore this garden further. The founders named the Charity “Snowdrop” as it symbolises hope and consolation. Air Arena Our thanks to the Edden family for all their work in preparing such a great fundraising event. We joined up with Air Arena, in Chichester, for a character themed toddler bounce in the Easter holidays. This linked in with the release of the ‘Peter Rabbit’ film. An additional character bounce in August is planned for toddlers to tie in with the’ Christopher Robin’ new film release. Our Annual Walk at Arundel Park, continues to be a highlight for Snowdrop families and the event was established 25 years ago attracting only 20 people. This has now grown to a staggering number reaching over a 1000. Many businesses support the Trust on this event and this year saw a splendid cake celebrating the Trust’s 25 years since it was founded. Stansted Park Farm Shop opening was launched by celebrity chef, Prue Leith CBE and The Sussex Snowdrop Trust was delighted to be there to celebrate. We are their charity for the year. A must visit for all foodies! Dorothy Cox – 180 mile cycle from Exeter to Chichester. Dorothy raised over Annual walk at Arundel Park £2,000 with great support from friends and other volunteers at Chichester Canal.

Prue Leith CBE at launch of Stansted Park Farm Shop Mayor and Mayoress of Chichester with Dorothy Cox 04 Local Rugby International supports Snowdrop

The Trust is delighted to announce that England International Rugby We loved her Player – Jess Breach, is an ambassador for The “Lady Miranda Emmett, our President Sussex Snowdrop Trust. for 17 years, died peacefully in her Jess said “I am really sleep, aged 90. excited to now be an She was a friend to all of us at ambassador for the Snowdrop and was a dedicated charity and I am looking supporter of the charity as she loved forward to supporting children. She was always interested and them over the coming involved in everything we did. Only a few years with their weeks before she died, she asked me fundraising events and how the plans for our Annual Walk were help raise awareness progressing. She instigated the event of the great work they 25 years ago, in the year we founded are do.” Snowdrop. Jess is looking forward She guided the charity, attended every to meeting the volunteers monthly meeting and most events. and supporters soon at various local events to With her humour, determination and help raise funds, Enabling England Rugby great faith, she was a real inspiration Snowdrop to continue its and we loved her.” excellent work. Di Levantine, Chairman & Co – Founder.

We welcome Abbie Jones from John Abbie Jones Lewis in Chichester. Abbie joins us for six months at the Walberton hub on a work-based secondment to assist with the fundraising, marketing and events function. Through her employer, the John Lewis Partnership, Abbie discovered the Golden Jubilee Trust. The trust was created by the John Lewis Partnership to allow a Partner (staff member) up to six months paid leave to work at a local charity of their choice. Abbie says; “I am excited to be joining The Sussex Snowdrop Trust as I have supported the charity on several previous events and I value the work of the nurses and the Counsellor supporting local families. I’m keen to utilise my skills and work with such a wonderful team”.

05 Support from Crate and Apple, Dancing to “Skiffling Around” Goodwood Racecourse, Arundel Castle, Chichester Canal, BIG THANKS Inglenook Hotel, Polka Dot Hair & Makeup, Jordon Butcher, Arundel Lido, Alexandra Leisure Centre, Businesses supporting the charity Alexandra Theatre, Chichester Festival Theatre, Brasserie Blanc, is so important to us. This can be Champneys, Cote Brasserie, done in a number of ways; Purchases Restaurant, Cobra & Bellamy, Bunnings, Q Hair, Volunteer – Staff from Lloyds Bank, Stephen Lawrence, Luckes Coffee White Stuff and John Lewis in Chichester Shop, The Flying Fortress, Weald & supported on our Walk at Arundel Park. Downland Living, Marks and Spencer. Luvsweeties. Southdown Pub Southern Co -Op in Bosham – Sponsors of our Walk medals Harris and Hoole, Co- op and Sainbury’s supported with cakes for our walk Pink Vintage Tesco – Groundswork -Community Engagement – new gazebo Truffles Bakery supplied an incredible 400 brownies and millionaire shortbreads

The Royal Oak, North Bersted and Project Linus UK Prince of Wales pub in Woodgate kindly displayed banners. Panther Van Hire Party on the Grass Stansted Farm Park – part of the opening with Celebrity Chef, Prue Leith CBE Air Arena – Character Toddler Bounce events House of Fraser Water from Rapid Relief Team Events -Russell’s Garden Centre, Birdham House of Fraser treated our volunteers #volunteersweek Project Linus UK providing quilts for our Snowdrop Children Pink Vintage Ice creams Edgcumbes – Coffee Roasters and Tea Merchants Party on the Grass – Tea Marque

Howard School, The Prebendal School, School Champions The Prebendal School Westbourne House and . We are so grateful for all the fun Several schools in the county have chosen activities pupils devise to make fundraising to raise funds for Snowdrop. This is a effective. From mufti days, book and cake wonderful way that children can connect sales, to end of term concerts and Balls. with other local children in the county who Many of the pupils know children who are have benefited from the support of our affected by a life threatening or terminal Snowdrop Nurses and Counsellor. illness which is a great motivator for making a real difference. Pupils can empathise with other children who have serious challenges they have to Ditcham Park School, Walberton If you work at a school or are a pupil to deal with each day through learning School, Ormiston Academy, Bishop Luffa and want to fundraise, please contact about the work of the Trust. Thank you School, , St Philip the office. 06 Dates for your Diary Who we are...

Diana Levantine th th 20 – 24 August 2018 Chairman & Co-Founder Air Arena, Chichester Valerie Seddon Winnie the Pooh Toddler Sessions. Vice Chairman & Trustee Toddlers meet characters from Winnie the Pooh and have brunch Trustee after a 45 minute bounce. Nick Cockram Joy Garbett £10 www.airarena.co.uk Kevin Shepherd James Tickell

Patrons Clive Behagg 8th September 2018 Mary & David Bowerman CBE Outdoor Cinema at South Stoke, Hugh Dennis Arundel. BN18 9PF Nick Herbert M.P. Rt Rev. Bishop Richard Moth The Greatest Showman (Bishop of Arundel & Brighton) A stunning setting to view this year’s Rt Rev. Dr Martin Warner () bolckbuster “The Greatest Showman”. Honeysuckle Weeks Bring friends and family to this unique fundraiser. Food and drink will be The Snowdrop Children’s Community Team available on site. Jane Evans From 6.30pm, film 8.30pm. Bridget Restall Leanne Asling Tickets £10 (plus admin fees) from www.eventbrite.co.uk Rachel Moore Jennifer Barnes-Andrews Sponsored by Thesis Management Claire Dorey and Hall & Woodhouse. Phil Portway Family Support Counsellor T: 01243 793617

Karen Spencer Team Administrator T: 01243 793619

The Westhampnett Centre 28-29 Westhampnett Road Chichester, West Sussex PO19 7HH T: 01243 793619

Office Team Lucy Ashworth, Fundraising Event Manager 10th November 2018 Georgina Fulcher,Fundraising Event Assistant Arundel Cathedral, London Road, BN18 9AY Clare Stubbs, Office Administrator The Yehudi Menuhin school near Guildford is one of the most prestigious music Michelle Wilkinson, Finance Administrator schools in the world for violinists . Only 5% of applicants who apply for a place are excepted,which indicates the very high standard of musicians who attend. Registered Charity and Office Address Several years ago students from the School gave an unforgettable performance Unit 3 The William Booker Yard, The Street, at a Charity Concert for Snowdrop, at the Chichester Festival Theatre. 35 violinist Walberton, West Sussex BN18 0PF took to the stage and enthralled the audience. T: 01243 572433 This year they are performing in Arundel Cathedral on 10th November at 7.30pm E: [email protected] and we promise you an evening you will never forget. W: www.thesussexsnowdroptrust.com Registered Charity No. 1096622 Tickets are £15 each and can be bought on Eventbrite Limited Company No. 4557686 (Limited by Guarantee) 07 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 give support to the whole family to Data Protection Regulations 2018) in Call to Action! 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 involved. , on if you complete the form overleaf There are amazing stories and exciting and send it back to us – or if you We have been together so long... We eventsdon we would liket to sharewant with complete to it online . you about our work in Sussex and the It’s so easy for you to do. 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 lose you now... overleaf! freepost envelope provided) . . . The Government is revising and we’re sure it will take you less than updating the 1988 Data Protection Act 1 minute! You may be aware that Data Protection regulations require organisations to seek permission to hold your contact information. As a result Sussex Snowdrop Trust must have your consent to Nursing care at home continue to communicate with you. for local children with life-threatening or We want to make sure all our supporters can be kept informed terminal illnesses of future events and news. It is really important for you to let us and support for their families know if you wish to continue to receive information from us. Please Here is how; complete the Form Overleaf It’s easy Go to: www.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 Huge 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