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"Doctors told us that he wouldn’t live past one, but Ezra has been an absolute miracle and is now four. Ezra is the happiest little boy. We just don’t know what the future looks like. It’s obviously a much shorter life, but we really don’t know and so we enjoy every day and live each day as it comes."
As a small baby, Ezra wasn’t reaching his milestones; he wasn’t lifting his head, smiling or looking at people and he wasn’t putting on weight. He was in a lot of pain and cried constantly. After lots of testing, doctors discovered that he had Zellweger syndrome, a very rare genetic condition. Ezra is losing his sight and his hearing, he can’t sit up, so he’s losing his tone and can only communicate with noises.
Ezra needs 24-hour care and someone must always be with him to deal with his needs. He doesn’t go to school as his condition puts him at risk of infection and his family can’t risk him catching anything, so he spends all his time with his family, which he loves.
Ezra's mum, Suzanne told us "Ezra enjoys water so much and his specialists have told us that hydrotherapy is good for his muscle tone; we just feel that a spa pool is the right wish for him. By having a spa pool at home he can enjoy and explore in the safety of his own environment.
With Ezra’s wish, I just want him to enjoy it and to be happy, but also for us, as a family, to have that experience with him and see his little face as he’s enjoying it.”
You can help children like Ezra
It’s only with your generous support that Make-A-Wish are able to provide children like Ezra lasting memories where the focus is back on childhood. Please give whatever you can today.