Noah Barlow was born two months premature and weighing two pounds. At two years old, he had his first metabolic stroke out of nine.

Over time, some strokes took his eyesight in one eye, another his ability to walk. His body accepted no food until age seven.

His mother Kat Barlow, 46, says: “There was a lot back and forth with the hospital and finally someone agreed to do an MRI”.

After five years, Noah was diagnosed with mitochondrial disorder. His parents were told he wouldn’t live past age 10.

Noah is now 14 and continues to beat the odds.

He has written a children’s book, "Beryl the Ninja Chicken", is an ambassador for the Mito Foundation and has touched audiences with speeches full of humour and resilience.

 

He inspires in his native Australia, where his mother moved from Bolton 26 years ago. But has also left an imprint on Bolton friends and family.

His mother Kat’s childhood friend Michael Smith, 43, owner of Bolton Books, was energised by Noah’s story.

Michael, from Deane said: “Noah’s condition is unique. I wanted to raise some money for him and Kat because they’ve done so much for others”.

He convinced his friend Adam Taylor, 42, of Lostock, to do a Chillswim challenge to raise £2,055 ($4,000 Australian dollars) for the Mito Foundation.

This has meant swimming three cold bodies of water across three months.

Remarkably, Adam could not swim before the challenge.

Michael says: “He has learned to swim to do this, he couldn’t two years ago when we started”.

In June, they swam 5.3 miles across Lake Coniston. The next was Ullswater, 7.5 miles in 15-degree water. Adam swam it in six hours. Michael in four.  

Michael says: “In August, we’re building up to Lake Windermere which is 11.25 miles. It will be a considerable challenge”.

Michael has kept in touch with Noah’s grandparents who have deep roots in Bolton.

Noah’s grandfather, Dr John Nagle, 74, is a retired GP who practiced in Westhoughton’s Unsworth Practice from 1979 to 2013.   

Dr Nagle says: “Michael and Adam are doing these fantastic swims to try and raise funds for the Mito Foundation.

 “Noah has mitochondrial disease but he’s one of many people that suffer from it and might not know.

“The Mito Foundation in Australia is part of an academic network.

“They share knowledge about mitochondrial disease globally and whatever money is given will benefit the wider world”.

Noah himself has been a disability advocate despite metabolic strokes and frequent seizures.

Kat said: “He’s written some grants for accessible playgrounds here. He wrote a grant for his primary school to get a new playground.

“He wrote to the AFL (Australian Football League) and now they’re the first ever wheelchair team”.

Noah doesn’t attend school anymore and is no longer able to walk without a wheelchair, his sense of humour shines through.

Kat says: “He uses a speaking device all the time now. He’s got a section for jokes and different facts to tell people.

 “It's a privilege to walk alongside somebody who has a joy for life I haven’t seen before. For him to be able to laugh even on the days he had another stroke and he lost his ability to move".

To give to Michael Smith's fundraiser, visit https://fundraise.mito.org.au/fundraisers/michaeljamessmith