Meet Noah: A Story of Courage, Resilience, and Joy
Born at just 29 weeks, Noah’s journey has been anything but easy. From the very beginning, he faced significant challenges.
"Noah was allergic to everything we ever fed him, and at 18 months, he started having stroke-like episodes. Doctors initially attributed it to his premature birth, but as more complications arose, we knew we had to fight to find answers."
For years Noah spent a significant amount of time in hospital and despite him being seriously unwell it was hard to work out one reason. As he collected new diagnoses and endured countless tests we still had no idea why our Noah was declining right before our eyes. Each and every single system in his body started to fail, something we later learnt is not unusual for mito.
"As Noah’s symptoms worsened, some doctors became reluctant to continue searching for answers. It was devastating. One doctor even said, 'See you in a year… if he's still alive.'
Of course we knew that as long as Noah was fighting for his life we would continue to do the same.
Finally, at age five, Noah was given a preliminary diagnosis of mito. At eight years old, doctors confirmed the specific type of mitochondrial disease. With the diagnosis came new support, and Noah now has an incredible medical team by his side.
For years, Noah was allergic to all food and still depends on tube feeding. His special, blended diet is delivered 24/7 through a feeding tube, with his backpack accompanying him everywhere—even to bed. Although he can now eat some “safe foods,” maintaining enough nutrition through eating alone is exhausting.
Despite these challenges, Noah’s zest for life is unstoppable. Now 16 years old, he proudly navigates the world in his wheelchair, affectionately named "Bumblebee." A daredevil at heart (preferring speed to safety), Noah loves wheelchair sports, going on adventures (getting stuck in a tree in his wheelchair was a highlight this year already) and spending time with his amazing friends who embrace him just as he is.
As well as being Captain of the Mito Movement, Noah was awarded Moorabool Young Citizen of the year in 2023. Noah said “I want to be a leader who represents diversity and disability and to change the world for people like me"
Noah loves to make people laugh. He brings joy wherever he goes, even leaving cupcakes and notes for his favourite people at the Children’s Hospital.
Mito has taken a lot from Noah, especially recently, but it has never taken his spirit. If you ask Noah how he feels, he says, “I choose to be happy." To all those taking part in The Bloody Long Walk, thank you for joining the Mito Movement to support Australians living with mitochondrial disease... just like my Noah."