Dylan's Story

"Dylan was always a calm presence, and as first-time parents, it was the happiest time of our lives. We went up mountains, spent time in the ocean and drove around Australia. Life was good. Looking back now, it just feels…innocent. We had no idea what was coming. But it was life-shattering. There is no other way to describe it.”

Dylan was born with a condition that is so rare, only one other child in the UK is currently living with the same diagnosis. The chances of having it are one in 1.2 million. 

For the first year of his life, Dylan’s parents Will and Sarah had no idea anything was wrong. They threw themselves into new parenthood, taking their happy and content little boy on exciting adventures, making memories that will last a lifetime.

Up until that point Dylan was developing like any other baby, but slowly, his parents started to notice things weren’t right and he was losing some of his abilities. What followed was a nightmare journey trying to learn what his diagnosis was, before ending up in hospital in the January 2021 lockdown, frightened for the future and terrified for their little boy.

The family felt psychologically and socially isolated and throughout 2021 spent time in and out of hospital, fighting pneumonia, seizures and apneas: “This disease is a bag of all of the worst things imaginable," continued Will. 

That was when Haven House came into their lives. We supported the family with music, yoga therapy, and hydrotherapy, as well as care at home.

"They empowered us to take charge of Dylan’s care. We built a team around us at the hospital, in the community and at the hospice. They worked collaboratively and provided the most exceptional care for the whole family. Without our hospice, there would have been nothing. We would have never got this far.”

Our nurse Michele recognised that the family needed extra special support. She helped them move into our family flat so that Will and Sarah could spend time with Dylan, while he got the specialist care and support he needed.

“We had this glorious week in the family flat. We felt cared for as a whole unit, as a family. Haven House held us. We had this implicit trust and belief in them, that they would look after us.” - Will

The whole family were cared for by our expert teams. But just as important was the support Will and Sarah received from other parents. Haven House helped them to feel less isolated and alone.

Dylan passed away in February 2023. 

Will said: "He died at home, which is what we always wanted. We were together as a family. There was no great drama. It was just us. That’s what we always wanted. He was a beautiful gorgeous boy. Everything about Dylan was remarkable, his little life had a big effect.”

And now, Will, Sarah and Benny are adapting to a new normal. “We had to adapt to the world of children’s palliative care, and now we are adapting again. We are just parents now, no longer medical professionals. Benny is walking, which is a whole new experience for us. Everything feels new.”

On Dylan’s first birthday after he died, the family held a memorial for him. “We invited 250 people and celebrated his short but truly wonderful life. As my dad says: “A little life, with a big impact.” And that’s exactly right. He never uttered a single word, but made the biggest difference to everyone who knew him,” added Will.