Meet Noah, the real star of Sunday’s A-League action

Full article first published on SBS’ The World Game:

Western United secured an important 1-0 win over Brisbane Roar on Sunday, but the most impressive performance delivered at AAMI Park that evening happened before a ball was even kicked.

As both sides went through their warm-ups before kick-off, 10-year-old Noah Barlow, accompanied by his walker and injured Western midfielder Sebastian Pasquali, was making his way around the touchline.

Encouraged by fans in the adjacent stand who had already made their way into the stadium, Noah was then cheered and applauded by the assembled Roar players as he completed his journey to the corner flag in the ground’s southwest corner.

It was a touching scene, with the smile on his face beaming through as he posed for pictures with Pasquali after the completion of his journey.

But what those watching on didn’t know was that the walk Noah had completed represented a remarkable accomplishment and something incredibly special for him and his family: his trek of 136 metres representing a 36-metre improvement on his all-time record.

“It’s massive,” Noah’s mother Kat told The World Game. “100 is the most he’s ever done. I saw his little face about halfway down just look at me like ‘ugh’ and I was like, ‘keep going! You can do it!’

“[He’s] absolutely thrilled to have had the opportunity to walk, at AAMI Park too, and with his team. It was so cool.

“[Noah and Pasquali] were chatting away – I’m not cool enough to stand with them, of course – so they were just chatting away to each other, next to each other. He’s 10 now, you can’t argue with a 10-year-old.

“They had a really nice connection and it was really kind of him to walk with Noah. Noah got a real kick out of it. He wrote on his shirt, ‘Noah, you’re the man’, so he was telling my mum and dad afterwards that ‘he said I’m the man!’.”

Noah, who normally gets around in a wheelchair he calls Bumblebee, was born with Mitochondrial disease (known as mito) – a condition that reduces the ability of mitochondria – which produce 90% of the body’s energy – to function. This eventually leads to a sufferer’s cells beginning to die, organ failure and, potentially, death.

Born at just 29 weeks, he was allergic to everything his parents and carers attempted to feed him at birth and subsequently began to suffer from stroke-like episodes at 18 months old.

An accurate diagnosis proved difficult to find, with Kat recalling one occasion where a doctor bluntly said that he would simply see Noah in a year’s time if he was still alive.

By age five he did have a working-diagnosis of mito, but it took until age seven for an official designation – Noah is now the oldest child in the world with his type of condition – to be made.

Although now able to eat some ‘safe’ foods, the exhausting effort it takes to eat them necessitates that he has a tube feeding him a special formula directly into his stomach 24 hours a day.

Nonetheless, that diagnosis allowed progression to be made in providing treatment, and the Star Wars fan is now able to attend school, make friends, leave cupcakes and notes for his favourite people at the Children’s Hospital, and play wheelchair sports.

It was his love of sports that brought him into Western’s orbit; attending a come-and-try day for the club’s newly launched wheelchair sports team that he now intends to join.

“It’s very challenging to find sports for kids in wheelchairs full stop,” Kat said. “He’s loved AFL and there are no AFL teams for kids so when we saw that powerchair sports had a soccer team he was just so excited.

“We went down to try and he just loved it. He has a friend who plays in the South Melbourne team who is the same age as Noah and he was desperate to have a go. His little face playing it was just… it was the face of finally belonging somewhere.

“When you’re ten and you’ve never had the opportunity to play a team sport ever in your life, with your peers ever, that’s a big deal. So to finally have the opportunity to play sport with your peers and have fun was a beautiful, magical moment and we’re so grateful to Western United for starting a team.

“Noah loves sport, he loves to be part of a team… Western United have absolutely embraced him and he certainly feels like it’s home.”

Noah’s Sunday expedition, though, was about more than just giving him a chance to get out on the AAMI Park surface.

The inspirational youngster is an ambassador for The Bloody Long Walk; a fundraising initiative of the Mito Foundation, who deliver services for those diagnosed with mito, search for treatments and cures, and fund education and advocacy programs.

With the help of his walker, Noah completed a 100m walk every day for ten days for this year’s event – Sunday representing his final leg and ensuring he added an extra 36 metres to his one-kilometre target – and he and Kat’s team ‘Noah’s Ninjas’ raised $3,824 of their $2,000 goal.

“Pete Bradley, who is Western’s school, club and community manager, reached out to us and asked if Noah wanted to finish his walk across AAMI Park,” Kat said.

This year’s event officially ended on March 10, but the ‘Noah’s Ninjas’ page remains open for donations on the Bloody Long Walk website.

“We roll with how we roll on the day that we roll and we make decisions based on how much fun things are going to be and how much joy they’re going to bring versus what’s sensible,” Kat explained.

“He has his own website called the Living Life List. We write lists at the beginning of every year of everything he wants to do to live life.

“It’s not a bucket list because we’re not looking to death, we’re looking for the best way to live life.”

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