Son's rare diagnosis was 'world-ending moment'

The family's world "shattered" when doctors said their son might not reach his first birthday

A family has been speaking about the "world-ending moment" when they were told their baby son might not reach his first birthday.

John and Suzanne, from Cheltenham, said their world became a "dark and broken" place after being told that Ezra had Zellweger spectrum disorder (ZSD) - a rare inherited condition that would leave him unable to sit up, eat or talk.

"As a dad, you feel like your job is to protect your child, and because I couldn't protect him, I felt like a massive failure," John said.

But the family said that after being left in "absolute despair", Acorns Children's Hospice in Worcester stepped in to help provide the "little moments that matter most".

"As soon as we walked through the door, it felt like all our needs were immediately met by people who knew what they were doing," John said.

Ezra was diagnosed with ZSD - a condition with only 500 known cases worldwide - at four months old.

"It was a world-ending moment for us," John explained.

"Our tiny baby was just four months old. From walking into the hospital one Friday morning expecting good news, to being discharged that same afternoon with the news that he was dying – we were in absolute despair.

"Seeing your child in pain is just about the worst thing ever."

The hospice was able to provide the medication Ezra needed to ease his pain.

"When the medication started to take effect, it felt like we could breathe again," John added.

The family were unsure about the idea of a hospice, but was amazed by the resources available there.

Ezra reached his sixth birthday and experienced several "firsts", including swimming in the hydrotherapy pool and spending time with a therapy dog.

John said: "They treated him like a prince – it didn't feel like life loved him much because of all the difficulties he faced, it made us feel so warm to know he was so loved."

The family remember Ezra with the help of their teddy, Ezra bear

Acorns also supported Ezra's siblings, Ethan and Eli, even after their brother's death in June 2022.

"Acorns' sibling service provides an unbelievably well-rounded support system for the boys," John said.

The family are participating in a Christmas appeal for the hospice, which aims to raise money to help it run.

The family also have a teddy bear to remember Ezra, which contains some of his ashes. Ezra bear is a part of special moments like holidays, days out, birthdays and Christmas.

John said they missed having someone to hold, but having "something that we can cuddle brings us a little bit closer because there is part of him that's always with us."