A local hospice has launched a new campaign to try and double the number of ill children it cares for in the area.
Chestnut Tree House introduced the scheme, called Hands Up, to Eastbourne last week in the hope it will encourage people to start fundraising for the charity’s cause. The hospice currently cares for 300 children with life-shortening conditions and their families, including 21 in the Eastbourne area.
Guests at a recent luncheon held at Deans Place in Alfriston heard how the charity has made a real difference to the Baker family from Eastbourne. Aimee, who is now nine years old, was diagnosed with Dravet Syndrome, a rare form of epilepsy that affects every area of her life, at just nine months old. She has needed round-the clock care ever since.
Mum Marie explained the impact Aimee’s condition has on her and Aimee’s dad, as well as their eldest daughter Katie. She said, “For the first four years, Aimee would have a seizure every 7-10 days. It would last up to an hour and result in her being hospitalised for 4-5 days, putting a massive strain on family life.
“Aimee is now nine and still has regular seizures, is 100 per cent tube fed, has no speech, is still in nappies, has limited mobility and a very severe learning disability. Because of all these issues we have no family or friends who feel confident enough to look after Aimee, even for a short time. This is where the Chestnut Tree has been a real life saver for us.
“I would never usually go to the cinema because I would be terrified to turn my phone off for two hours and focus on anything other than Aimee, but with our Community Nurse I can do just that. She knows Aimee and us so well, I know she will look after her with the same care and attention that I would.”
We’re not asking people to put their hands in their pockets today, we’re asking them to put their hands in the air and say ‘Yes I’ll help.’Karen Brailey, community nurse manager
The family also visits the purpose-built hospice near Worthing. Marie added, “We’ve had many stays over the past seven years or so. Leaving Aimee was incredibly hard, but we knew she was in safe hands and, along with the guilt of leaving Aimee, there has always been the guilt that Katie has missed out on that one-to-one time and hasn’t had a proper holiday since Aimee was born.
“Aimee did have seizures while she was at Chestnut Tree but they were dealt with fantastically and she had a lovely little holiday of her own. She went swimming every day, went down to the beach on the bus and even made a new friend. I honestly don’t think the guilt of leaving Aimee will ever go but to have somewhere like Chestnut Tree is invaluable.”
Karen Brailey, community nurse manager at the hospice said, “We’re not asking people to put their hands in their pockets today, we’re asking them to put their hands in the air and say ‘Yes I’ll help.’ That might mean getting your company involved, holding a fundraising event, volunteering, spreading the word or taking part in one of our sponsored challenges.”
Anybody who would like to put their Hands Up and pledge their support to Chestnut Tree can find out more at Chestnut-Tree-House.org.uk/handsup.