Ezra was a wonderfully happy little boy – the apple of his family’s eye and a huge fan of cuddles.
John describes Ezra as ‘forever six’. Despite doctors saying he wouldn’t reach his first birthday; Ezra defied the odds, and his family enjoyed six ‘miracle’ years with their little boy before his death in July 2022.
John and his wife Suzanne were overjoyed to welcome Ezra into the world in 2015. Yet, at just 10 weeks old, Ezra was ‘failing to thrive’ and was admitted to hospital. It was then that little Ezra was diagnosed with Zellweger syndrome, an extremely rare genetic condition affecting his metabolism and neurological function.
It is so rare in fact, that Ezra is thought to be amongst just a handful of children in the UK, with only 500 known cases worldwide.
“It was a world-ending moment for us,” John explained. “Our tiny baby was just four months old. From walking into hospital one Friday morning in February expecting good news, to being discharged that same afternoon with the news that he was dying – we were in absolute despair.”
The rarity of Ezra’s condition left the family with little information or support.
“We were left all on our own, with nothing but an information sheet. Suddenly, our world became a dark, broken place – full of fear and uncertainty about how long we had with Ezra. It was terrifying.”
It was just 48 hours later that Acorns stepped in, at the time when the family needed them most.
John said: “By that Sunday, Acorns had scooped us up in their safety net. It felt like a warm hug at the moment we needed it most. Someone told us, ‘You’re not on your own – we can help you.’ It meant everything.”
