Five-year-old Noah Barlow has never eaten in his life. The Balliang youngster is fed formula through a tube directly into his stomach because no food is safe for him.
He was born with multiple disorders, some so rare they had no name, but last year doctors narrowed his diagnosis down to mitochondrial disease, a chronic condition with no treatment and no cure.
Thanks to a crowdfunding campaign, Noah’s journey to improve the quality of his life started on Monday after he and his mum, Kat, arrived in Brisbane to begin a brand new neuro-therapy.
The therapy costs $6000 per four-week block and will address some of the debilitating symptoms that Noah has, such as his developmental delays, autism, PTSD, anxiety, and vision and motor control.
A Gofundme campaign, launched last month, raised almost $40,000 in two weeks, which will cover therapy costs, flights, accommodation and car hire for two months.
Bacchus Marsh residents donated goods, crafts and services for a silent auction, which was widely publicised on Facebook.
NOAH WITH DAD MARK AND MUM KAT (SUPPLIED)
The Barlow family, from left dad Mark, Noah, 6 and mum Kat.
“The words ‘thank-you’ are too tiny to express our never-ending gratitude for all the support we received,” Mrs Barlow said.
“We never even dared to dream the outpouring of love would be so huge and we are utterly overwhelmed by the hearts of people all over the world who contributed.
“We put ourselves in the most vulnerable of all positions in asking for help, and our community just opened its arms to our son.”
Noah suffered five devastating stroke-like episodes early on in life, which left him unable to walk, talk, breathe without aid, or see. Each episode caused more brain damage.
But despite all the challenges, Mrs Barlow describes Noah as a Star Wars-mad, volcano-loving larrikin with a wicked laugh.
“He stops to dance in shopping centres when the music takes him – and he takes my breath away,” she says. “He’s an old soul with a big heart, and he’s the bravest, most determined person I know … he keeps going no matter how hard things are for him.
“He’s so much more than all the things wrong with him and all the things he can’t do.”
Details: www.gofundme.com/noahbarlow
