The only time six-year-old Jacob Walker has ever been able to stay away from home overnight is when he’s admitted to hospital with life-threatening seizures.
Having epilepsy and significant brain damage means Jacob uses a specialist bed at his Ballymoney home. The high sides are padded to prevent injury during seizures and from constantly kicking and rolling, but it is too big and bulky to be taken anywhere else.
Jacob can’t walk or talk and has absolutely no awareness of danger, so he is totally reliant on his exhausted parents, Christine and David, for 24 hour care. He can’t be left unsupervised for a moment during the day.
Without a specialist travel bed Jacob isn’t able to enjoy time away for respite care with relatives and the family, including older siblings, Aoife, aged 13, and Harvey, eight, who has Autism, have never been on holiday together.
However, the specialist bed Jacob needs to do this costs £2,999. In desperation Christine and her husband David turned to Newlife the Charity for Disabled Children for help. The charity is now trying to raise the necessary funds.
Mum Christine said: “It’s impossible for us to have any kind of break away, there just isn’t a place for Jacob to sleep that doesn’t put him at risk. He’s too big for travel cots and can easily throw himself over the side, which would be catastrophic. Even in hospital the only option is a baby cot, so I have to stay awake the entire time to watch him.
“Jacob’s Occupational Therapist said the NHS and local authority don’t provide specialist travel beds for children. I feel absolutely helpless and hopeless.
“I want to provide for him, but this isn’t a new toy Jacob wants. The specialist equipment he needs just to get through life is so expensive. It runs into thousands of pounds for each item, such as his bed and his pram. It was even £2,000 for his car seat, which Newlife has already provided, but I know charities can only do so much.”
Christine added: “It would mean so much for Jacob to be able to stay away from home overnight without being at risk. Life wouldn’t be so restrictive for the children, we could have more of a family life and be able to enjoy experiencing new things together. We just need help to make it happen.”
Newlife’s Head of Charity Operations, Stephen Morgan, said: “A specialist travel bed is so much more than a safe place to sleep for Jacob, it’s the freedom to enjoy quality time with his family as well as vital respite care. This is invaluable in helping relieve the massive pressures faced by families with disabled children.
“There are now 1.1 million disabled children in the UK, a 15 per cent rise on the previous year, but budget cuts to the health service mean more families, just like Jacob’s, are having to turn to charities like Newlife for help.
“To enable us to help Jacob we’re appealing to local businesses and members of the community to raise funds for this special bed so he is able to stay away overnight, free from the risk of injury.”
To donate towards Jacob’s specialist travel bed, please visit www.newlifecharity.co.uk/antrim. Alternatively, contact Suzie or a member of the team on 01543 462777 or email firstname.lastname@example.org.
Any funds raised above what is needed for Jacob’s specialist travel bed will be used to help other disabled and terminally ill children in need across County Antrim.