Jude's story
For almost a decade, our lives were full of sunshine. My wife Emma, our son Jude and I spent many times camping, swimming and cycling, just enjoying being together. When his little sister Elodie came along, our family felt complete.
Jude was nine when we noticed something was wrong.
He would randomly choke when eating, he couldn’t hold his breath when swimming and his muscles seemed to be getting weaker.
He was in and out of hospital for tests and during one hospital stay, he went into respiratory arrest. Jude was in a coma for a week, waking up on his tenth birthday.
Within a year, Jude went from being a happy, healthy and active nine-year-old to not being able to walk or talk and needing a ventilator to help him breathe.
Jude still doesn’t have an official diagnosis and probably won’t ever get one.
Whilst his mind still works perfectly and he knows exactly what’s going on, the nerves that control his movement are no longer working properly and no one knows why.
Between work, caring for Jude and being parents, we don’t have much time for ‘normal’ family life. But we are learning to adapt and the team at Demelza are helping us to find ways to continue doing all the things Jude loves.
Our lives felt quite dark for a while, but we are beginning to find our sunshine again.
Jude gets so excited to visit Demelza where he is finding his love for the water again in the hydro pool.
When the Demelza community team come to our house, they spend time with Jude and Elodie together. This gives me and Emma the chance to just do the stuff we would have taken for granted before, like a long shower or enjoying a biscuit and a hot cup of tea. It makes you realise the importance of the small things that keep you going.
We simply can’t put into words the level of support we receive from Demelza. They bring sunshine to the lives of children with serious or life-limiting conditions and to families like mine in your local community.
Thanks to the generosity of people like you, more families are able to step away from the noise of everyday life and the demands of 24-hour care, giving them time to just be a family.
"So, what is sunshine for us this Christmas? It’s simply being together and Demelza lets us do just that. We aren’t carers, we are parents. Jude isn’t a boy with a life-limiting condition, he is our son. We are a family."