Horsham dad launches fundraiser for hospice caring for his son, 5

Ed Butler, 42, will be cycling 350km - or nearly 220 miles - in aid of Chestnut Tree House as a thank-you to them for caring for his little boy Archie who was born with half a heart.

“We were told very early on in Archie’s life that he was going to be life-limited,” says Ed. “Archie had his first heart surgery at 10 days old and stayed in hospital for eight months.”

When Archie finally went home, the family were introduced to Chestnut Tree House children’s hospice for additional support. “For parents who have a child who is born with a life-limiting condition the world is often an emotionally worrying and fraught place. The thought of a hospice didn’t even register in our consciousness when Archie was born,” said Ed.

But the family were delighted when they were told that Archie could get short-break care at the hospice. “Archie has a twin, Harry, and he also has an older brother, Ollie, so life was a bit hectic with the extra care and attention that Archie needed. So, we were relieved when we received the news that Chestnut Tree House were there to help us.”

A few weeks later, the family had their first stay at the hospice. “It was a wonderful introduction for everyone. It gave Archie the opportunity to explore the house, whilst we had a much-needed break and peace of mind that we were so close to him in case he needed us.

“We needn’t have worried as from day one Archie gave us a quick ‘goodbye’ and never looked back.”

He said children’s hospices were far from the sad places many think they are. “They are a beacon of light for the children who go there and perhaps more importantly, the families who get respite care or space to grieve.”

Fast-forward almost six years later and Archie has had eight heart ops. “Right now, Archie is in good health,” says Ed. “He is the life and soul of our family. He's so happy.”

But, he said Archie still had hurdles to face and his family had been told that he might need a heart and lung transplant in future.

To sponsor Ed visit www.justgiving.com/ed4cth