By George Day • 05 March 2020 • 13:45
The mother of the youngest person in the world with ‘children’s Parkinson’s disease’ has said he is ‘trapped’ in his own body.
Jaheel Marsh, 3, was diagnosed with Amino Acid Decarboxylase Deficiency when he was just three-and-a-half months old – the youngest person in the world to have the rare condition.
Mother, Bec Marsh, 41, has described the condition as ‘children’s Parkinson’s disease’ and that she just wants to feel Jaheel hug her back.
The toddler has spent over half his life in hospital and is unable to walk, talk and eat. Without life-saving treatment, he is not expected to live past the age of 7.
Bec, from Melbourne, Australia, is now appealing for help raising the £60,000 needed for his surgery.
Jaheel has been accepted to undergo Gene Therapy Brain Operation in Poland in May.
His mum said: “Jahleel was diagnosed at three-and-a-half months, which meant he was the youngest child in the world to have it.
“His chances of having it are one in 56 million, so it’s incredibly rare.
“Doctors told me not to google anything about his condition. They said the life expectancy without treatment is around seven years old.”
The treatment is experimental but Jahleel’s mother – who is a full-time carer for him – said she is hopeful.
“It’s just so hard that money is the only thing standing in the way of my child being able to have a life,” she said.
You can donate to the fundraiser here.
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