Dave and Cherie have three teenage children – Jay (17), Ava (14) and Ella (12). Jay and Ella both have Spinal Muscular Atrophy, which affects their skeletal muscle activity such as walking, breathing, and swallowing, leading to muscle weakness and atrophy. That means both Jay and Ella use wheelchairs to get around and as they have grown up, they have gotten weaker.
Dave describes his son Jay as being as close to a normal 17-year-old as you can get.
“He’s pretty confident and is always out doing things! He like to be online with his mates a lot, he goes to parties with friends from school. His mates are super inclusive so he’s always going to someone’s house or the movies. We have portable ramps which he uses to get about.” he said
With three teenagers, all with very different personalities and needs, Dave and Cherie’s life is non-stop. Between social outings, physical therapy, extra-curricular activities and full-time work the family try to navigate all of their commitments as best they can.
To try and mitigate some of the exhaustion and burn out that was mounting under the pressure, Dave and Cherie decided to build a pool into their back garden. The foundations for the pool were generously donated, and now it will allow Jay and Ella to do their hydrotherapy at home.
Youngcare provided an At Home Care Grant to help fund the paving and decking in the back garden to make access to the pool more accessible and safer for the whole family.
“It’s made the whole back of the house accessible for them, and safer as well. At the moment there’s ramps out the door, and it’s quite steep so it’ll be safer for everyone!”
The financial strain of having two children with high physical support needs is a stress point for Dave and Cherie.
“You feel like you’re battling. It’s not like we’re trying to exploit the system; we just want some stuff to make their life easier. Cherie and I don’t want to just be their full-time carers.”
The nature of Spinal Muscular Atrophy means that as the kids get older, their conditions will continue to deteriorate. It is important to both Dave and Cherie that they can provide Jay and Ella with the opportunity to live their young, independent lives for as long as they can. That is why the pool is so important.
“A lot of it is about maintaining what they’ve got because they’ve gotten weaker. They can both move around and float in the pool, it lets them feel free and they really enjoy it.”
For Jay, they have already converted the double garage into a studio so that he can have his own space but Dave expects that because of Jay’s confidence, one day he will want to leave the family home.
“I’ve always held dread in the back of my mind that at some stage he would have to go into an old folk’s home or something. But Youngcare and other apartments make you feel better, because I don’t want to dump my kid into a nursing home in his mid-20’s or 30’s, that’s not a life.”
For now, having the pool is something that the whole family can enjoy together for the first time.
