Arthur Waymark, aged nine months from Emsworth, was born in April 2013. When he was just two days old he had his first seizure and this was the beginning of a long and difficult journey for his parents, Gareth and Lora, and their friends and family. Arthur has now sadly been diagnosed with a very rare and life-limiting epileptic syndrome called ‘Migrating Partial Epilepsy in Infancy’ or MPEI and he will only live a very short life.
Arthur’s family have met a lot of amazing people along their journey but for them it is Chestnut Tree House, the only children’s hospice in Sussex, that really stands out. Lora, Arthur’s Mum, tells her story of how Chestnut Tree House has shone a light on what seemed to be a very dark and gloomy prognosis for Arthur.
Said Lora, “Arthur's initial diagnosis was very bleak and we were devastated. However, the staff at Chestnut Tree House have helped us to stay positive and focus on giving Arthur the stimulation he needs to enjoy his life. The hospice, with their amazing, dedicated and specialist staff, will care for and support Arthur, myself and our family throughout his short life. They won’t ask for any money and they will be there no matter what in whatever situation we need them. This is why they are such a lifeline to us.
“It costs £6,850 a day to provide all the specialist care at Chestnut Tree House, both at the hospice and out in the community across East and West Sussex and South East Hampshire. The hospice receives less than 8% funding from central government to help cover this cost and therefore relies heavily on the generosity, help and support of the local community. Many of our friends, family and colleagues have said that they would like to support us and help raise money for Chestnut Tree House and so that’s when we decided to ‘Pay for a Day’.
“While all direct donations will be greatly received by the charity, what we would really like is for those who wish to support us, to get active and do something to raise the money, making special memories for yourself as well has helping this fantastic cause.
“You could do a sponsored run, walk or swim. Something really challenging like a skydive or mountain climb. Or, if you’re not feeling so energetic, you could hold a cake sale, fancy dress day or raffle. You could even shave your head! The possibilities are endless and, as we embark on a new year and make our resolutions, perhaps becoming one of Arthur’s Adventurers could be yours?â€
If you have been inspired by Arthur’s story and would like to become one of Arthur’s Adventurers, then ‘like’ the Arthur’s Adventurers Facebook page and let them know what you’d like to do. The Chestnut Tree House Fundraising Team would also like to hear from you, all you need to do is email fundraising@chestnut-treehouse. org.uk or call them on 01903 871820.
Make 2014 a year to remember and become one of Arthur’s Adventurers, supporting Chestnut Tree House children’s hospice. To make a donation to the Arthur’s Adventurers fund please visit their JustGiving page: http://www.justgiving.com/Arthurs-Adventurers