Aussie mum of boy with mitochondrial disorder calls it a ‘terrible gift’ after doctors said he wouldn’t live beyond age 10

Climb a mountain, have a picnic on a volcano, hug a there, stand on a table dressed as a Viking.

These are just a few items on Noah Barlow’s ‘living life list’.

The Aussie boy is currently the only living person in the world diagnosed with mitochondrial disorder – a rare genetic disease affecting every cell in his body.

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Noah’s Outlook was bleak – when he was just a few years old, his parents were told he wouldn’t live past 10.

But Noah is just about to celebrate his 12th birthday, and he is absolutely thriving.

The pre-teen continues to embrace every day and is still ticking off items from his living life list.

Noah arrived 11 weeks early. Credit: Facebook / Noah Barlow

He’s also making himself available to help other sick children who might need encouragement as they face their own medical appointments and treatments.

“Noah was our IVF baby,” Melbourne mum Kat tells 7Life.

“He was Lucky egg number 13.”

Noah raced into the world 11 weeks early, weighing just a little more than one kilogram.

After 51 days in hospital, the tiny baby was given the all clear to join Kat and his dad Mark at home.

Slow development

He was ticking off his milestones – albeit slowly – and Doctors assured the family his tardy development could just be down to being premature.

But when Kat started moving Noah on to solids, she became ill with every food she tried.

Kat attempted to give him more than 60 types of food but to no avail.

Doctors encouraged her to remain persistent and handed her a variety of reflux medication.

But deep down she knew something else was going on – when Noah was 12 months old, they weighed a minuscule six kilograms.

Kat kept seeking answers and, two months later, her son was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES).

The condition causes a severe allergic reaction to all foods.

Mum Kat says every day is an Adventure with Noah.
Mum Kat says every day is an Adventure with Noah. Credit: Facebook / Noah Barlow

It was a bittersweet moment for the mum – she finally had her answer but it meant little Noah was in for a life of tube feeding.

And that wasn’t the end of his life-changing diagnosis.

When he was two and a half, he started suffering seizures and stroke-like episodes – and over the next two years the hospital became his home.

He lost his vision and his ability to walk, and eventually, an MRI Revealed he had significant brain damage.

Specialists were at a loss as to what was causing the little boy to deteriorate before their eyes.

Best life possible

Noah was eventually allowed back home and, as Genetic testing continued in the background, the family wanted to give him the best life possible.

“We don’t know what Tomorrow will bring,” Kat says.

“We live every day to the fullest.”

Noah began his ‘living life list’, a bucket list of sorts where every year the young boy would add some activities they would like to do.

He started off small with things like ‘building a Sandcastle’ and ‘dressing up as a Viking and standing on the table’.

“I was like,‘ Great, we can do that right now, ’” Kat laughs.

Dreaming big

Then Noah began dreaming big and added to his list ‘having a picnic on a volcano’ and ‘hugging a seal’.

Determined to make her son’s Dreams come true, Kat found a dormant volcano in Victoria.

With a picnic basket packed, the family headed out for the day.

Noah underwent years of Genetic testing to uncover what was causing his symptoms.
Noah underwent years of Genetic testing to uncover what was causing his symptoms. Credit: Facebook / Noah Barlow

For Noah’s seal-hugging item, a friend of a friend helped the family out and Noah made his way to Sea World on the Gold Coast.

Grinning ear to ear, they wrapped his arms around his slippery new best mate.

Eating again

As Noah churned through his living life list, Kat was determined to help her son eat.

So every mealtime, she would sneak micro amounts of food into her tube-fed formula.

Some days she would boil carrots and mix one-eighth of a milliliter of carrot water with his formula.

Over the years, she slowly increased the dose – and at age seven they had his first meal.

“Because he hadn’t eaten anything until he was seven he has the best diet ever,” Kat laughs.

“His second favorite food is Kale!”

A year later, the family received another diagnosis, this one heartbreaking.

Noah had the incurable mitochondrial disorder – and wasn’t expected to make it past the age of 10.

Kat doesn’t like to dwell on her prognosis and calls her condition her “terrible gift”.

“I wouldn’t wish this is anyone,” she says.

“But we live every day like we might not get the next.

“We take the small wins because they are huge in our world.”

Kat says her son is wise beyond his years and helps out other children in need.
Kat says her son is wise beyond his years and helps out other children in need. Credit: Facebook / Noah Barlow

Noah’s 12th birthday is in May and every day he exceeds Doctors’ expectations.

He has added to his list of goals ‘drive a big dump truck, publish a second book and go fishing’.

“You’d think going fishing would be easy,” Kat says.

“But when you are in a wheelchair and are highly allergic to fish it makes this difficult.”

Extraordinary life

For Kat, where there is a will there is a way.

“From the moment she was born, I knew life was never going to be ordinary ever again,” she smiles.

“Life is one extraordinary adventure.”

Noah is in grade six and is a school captain.

Kat doesn't like to think about Noah's prognosis and the pair likes to be positive and spontaneous.
Kat doesn’t like to think about Noah’s prognosis and the pair likes to be positive and spontaneous. Credit: Facebook / Noah Barlow

He blew away teachers and peers in his pre-captaincy speech when they received our biggest gift in life is our differences and it takes all sorts of differences to make the world turn.

He excelled at his athletics Carnival, even if mum thought he might have stretched the rules just a little bit.

“He’s the biggest cheat,” she laughs.

“But he gives everything a go, he does the shot put and the egg and spoon race.

“He never dwells on what they can’t do, like the high jump. He doesn’t complain. ”

Noah now has around 35 ‘safe foods’ which he can eat.

His favorite is bacon but he hates the taste of chocolate, lollies and chips.

“It’s all about balance,” Kat laughs.

Sharing his story

Since Noah could talk, they have been sharing his story to help others.

Sick children often reach out for advice on his Facebook page and he replies to each one, helping often-frightened kids through their treatment.

“One time there was this kid who was scared of getting an MRI,” Kat recalls.

“He told them they didn’t need to be brave for a whole day, they just needed to be brave for 15 seconds until the test was over.”

Noah is in year six and is a school captain.
Noah is in year six and is a school captain. Credit: Facebook / Noah Barlow

Kat says Noah is wise beyond his years and he feels it is an Absolute Privilege to help others.

And she is forever Grateful for the life she has helped her lead.

Kat says she is an open book – and if anyone needs a shoulder to lean on while their child goes through treatment, she is available to listen.

You can reach out to Kat on Kat Barlow Empowerment Ethos and Noah on Noah Barlow.

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