Jack's story

“Just because your child goes to a hospice, it doesn’t mean it’s the end. To us, it was the start of a new journey. And if you support the hospice, know that it has changed our lives."

Jack is 15 years old and has Mowat-Wilson Syndrome. Jack, his mum and dad, Kelly and Sam, and his younger sister, Olivia, nine, have been using the services of Martin House for two years.

Jack was the 33rd person in the world to be diagnosed with the condition at just six months old, and to date, there is known to be around just 200 people worldwide with the same condition. He has many complex needs, including Tretalogy of Fallot - a type of heart defect, Hirschsprung disease, where his large bowel had no nerves and has been removed and replaced with a stoma, and he also has severe epilepsy. Jack can understand many things, but he can’t express himself fully.  

“When he’s pain free, usually he’s a sociable, happy boy. He loves people and he especially loves sport! He’ll go to football games and be really engaged and vocal. And it’s the same with music – he just loves it!” says Kelly.  

“As a mum, you don’t get training to be able to care for your poorly child. You pick it up as you go along and hope for the best. Of course it was new to me when he was a baby, but now it’s become our norm. It’s very hard, but I wouldn’t change him.”

Two years ago, Kelly and Sam were encouraged to seek support from Martin House by Jack’s heart consultant.

“We didn’t realise that Martin House was what it is. We just saw a hospice as end of life care and that was that, so we were quite dubious to begin with.

“But when we first visited, I didn’t feel sad, I felt relaxed. Everyone seemed to understand and I felt looked after. There’s so much love and compassion from the doctors who listen to you and take on board how you feel, which makes you feel so welcome.  

“Martin House has changed everything about Jack’s care, too. You couldn’t meet a nicer set of people and they’re not just taking care of your child, they’re taking care of the whole family.”

Jack’s younger sister, Olivia, also gets a lot out of the support that Martin House can provide.

“I feel Jack’s safe at Martin House which allows us to spend time together with Olivia, knowing he is being looked after. She’s very proud of him and very encouraging of him and it’s good for her to come to Martin House, too, because she meets other children with brothers and sisters who experience a similar day-to-day life.

“She’s never the odd-one-out, and she never has to explain anything to anyone else to protect Jack – no-one is staring at him at Martin House. Since he’s deteriorated, she lays with him often when he’s tired and sings to him.”

Jack’s condition has become palliative since September 2019, having developed gut failure a year before.  

“Jack is having palliative care, so our aim from now on is to make him as comfortable as possible and give him the best quality of life.

“I know there will be a time in the not so distant future where we will be using Martin House for the other reason, but I wouldn’t want to be anywhere else when that time comes.”