THE PARENTS of a disabled child who has received help from East Anglia’s Children’s Hospices (Each) for almost 10 years are keen for people to take part in this year’s Santa Run.
William Davis was born with a rare genetic disease called Tuberous Scerlosis Complex, which causes tumours to grow in his brain and on other vital organs.
It has resulted in him having severe epilepsy, autism and attention deficit hyperactivity disorder, making the help he and his family get from Each all the more vital.
“The hospice offers respite for William, who goes there one or two nights a week, and gives him the chance to be treated like a little prince while allowing us to get things done and get a good night’s sleep, which makes us better parents,” said mum Paula.
She and husband Nick, of Sicklesmere Road, Bury St Edmunds, were told their now 12-year-old son would never walk or talk and would likely die before the age of 10, but ‘the determined little soul’ has ‘exceeded everybody’s expectations’.
He is just one of the children who use the new children’s hospice in Ipswich, The Treehouse, which was built using £3 million raised in a 12 month appeal, launched in March last year.
“He gets full nursing care and everything revolves around him so we don’t feel too guilty leaving him,” said Paula, adding: “It’s like being part of a wider family where everybody understands the stresses and strains that you have.”
Each also offers sibling support to William’s sister Jessica, allowing her to interact with other children who understand what it is like to have someone ‘hit out’ at you.
Simon King, head of palliative care services, said: “The Treehouse provides the space families need to meet, not only their care needs, but their physical and emotional needs too and we’ve taken great care to ensure it’s a welcoming place – a home from home.”
To deliver its services, Each needs to raise £4.8 million from public donations each year.
“The children’s hospice is a place that everybody would prefer not to have to use, but when you have a child that’s ill and there’s a possibility that they won’t survive from childhood into adulthood then its a fantastic place to have,” said Paula.
For information on fund-raising events and Bury’s Santa Run visit www.each.org.uk or call 01473 237243.