Elijah's Story

Elijah has an undiagnosed degenerative condition and is four years old. Elijah is supported by his mum and dad, Simonne and Steve, and his older brother, Tobias, who is eight years old.

For Simonne and Steve, Martin House is a “home-away-from-home”, for them to just be parents, and the family tend to visit three to four times a year.

“The many different hats you wear at home you leave at the door when you arrive at Martin House”, says Simonne.

“We no longer need to be nurses, physiotherapists and pharmacists all rolled into one. We can just be us, and I love the fact that your child is just a child when they’re here.”

Elijah began to have epileptic seizures at just four weeks old, and at ten weeks old, doctors told Simonne and Steve that his condition was life-limited. Elijah was referred to Martin House by a specialist working at the hospital where he received care.

“The first time we visited Martin House was just a couple of days after Elijah’s first birthday. We were so used to doing everything ourselves, so it was strange to find that actually there was someone to do all of Elijah’s medications. It was overwhelming, but in a really good way."

Elijah’s condition makes him, developmentally, similar to a newborn, but in the body of an almost four-year-old, which means Simonne and Steve are on constant alert.

“During the night, we do need to wake when we hear him, and it’s not simply a case of stirring. You have no choice but to make sure you’re alert as you’re the emergency responder for your child in that moment.

“Our lives have had to change since Elijah, and Martin House gives you a little bit of the old normality back. We leave our troubles at the door. I’ve got every faith in everybody here and sitting outdoors in the good weather among the nature is so soothing.”

For Tobias, Elijah’s older brother, he realises that a lot of what the family do is dependent on how well his brother is.

“Tobias has grown up learning how to help Elijah. He knows what to press on the various equipment we use and if something beeps, he’ll often say “I’m on it, Mum!”

“At Martin House, he has access to all this open space with an abundance of activities – toys, swings, you name it, and he gets dedicated time from the staff who can read a book with him, or do craft work.

“The hospice really ticks so many of our family’s boxes in different ways. It gives us the time for things we don’t always have time for while recharging our batteries.

“It’s hard to put into words what it means to us. As a parent, you become resilient and self-sustaining and I think a lot of it is about breaking the taboo of what a hospice, and particularly a children’s hospice, is. I wish everyone could see what a day at Martin House is like. It’s an amazing, magical place. It’s like coming home.”