Billy's story

Billy has been using Little Havens since just after it opened in 1998. He was diagnosed when he was a few months old with A Genesis of the Corpus Collosum, which means he has multi-complex epilepsy, is brain blind, has profound developmental delay and cerebral palsy. Billy is totally immobile and dependent on others for every aspect of his care and wellbeing.

Now 18, Billy will soon be transitioning to adult hospice services.

When Billy was first diagnosed his parents, Caroline and Terry, were told he wouldn’t live to see his first Birthday.

“Obviously things changed and he has just gone on and on and on,” says his Dad, Terry. “He has had a few close brushes with death but he keeps coming back.”

“The older he gets the greedier we get with wanting him for longer,” adds his Mum, Caroline.

Billy has four older siblings and several nieces and nephews.

Billy’s Mum, Caroline, says

“You can’t put into words what Little Havens has meant to us over all the years we’ve been coming. It’s knowing that somebody has always got your back. It is the support and that they care for your child to the same extent you do."

“When we leave Little Havens for the last time it will be with a smile on my face. Even if tears are rolling down it at the same time it will still be with a smile on my face."

“Even when you are feeling at your saddest Little Havens can still be one of the happiest places to be.”

“Even though the format of children’s hospices can be explained, many people can’t grasp the concept. I cannot imagine a life without Little Havens because it has been with Billy since he was born."

“It sounds awful but transitioning to adult care services wasn’t something I expected to be doing. It takes on a different format, when they are children you are given options of what services you can access and you take whatever you can. With the adult commissioning I was asked what I wanted, and it totally took the wind out of my sails. For the first time I couldn’t answer because I was so used to being in a position where I would say you lead I follow. What Billy’s needs are as an adult is completely different. You are supposed to take a step back, that’s what everyone expects, but letting go of the care of your child is not a very easy thing to do."

“I really hope people continue to support Little Havens. Because sadly there is going to be more children who will need to come here, I think it would be really sad if they couldn’t have what we have had the privileged of having. That is what it has been; you become a member of a special club. It has been precious, it is really precious.”

To find out more about how you or someone you know would benefit from the care at Little Havens, click here.

If you would like to donate to Little Havens Hospice please click here.

Contact us today on 01702 220350 or email us