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- Published: Thursday, 22 August 2019 15:35
When Bridge Housing staff walk the 35-km Bloody Long Walk from Palm Beach to Manly on September 8, we are doing it for kids like Noah and his Mum Kat who are living with mitochondrial disease. Read his story below.
We’d love you to support our Bloody Long Walk campaign page with a donation, no matter how small, to help raise much-needed funds for this very worthy cause. Learn more or donate here.
Noah’s story
My name is Kat Barlow and I'm the proud mum of Noah...
Noah is the official captain of the Mito Movement. He's a massive comic book fan so he loves being called 'Captain Noah'. He tells everyone around him that he's famous, with the biggest smile on his gorgeous face.
Today, I wanted to share Noah's story with you, so you can understand why I'm so grateful for your support...
Noah was born early at just 29 weeks. As a baby, I knew something wasn't right when he failed to meet the usual milestones for his age. My husband Mark and I fought hard to find a diagnosis that would explain what was happening to our little boy. Months turned into years and Noah endured test after test (including invasive muscle biopsies). He was incorrectly diagnosed multiple times over 6 years. It was tough.
Finally, at the age of seven, Noah was diagnosed with mitochondrial disease (or 'mito' as we call it).
And I can tell you, NOTHING can prepare you for being told your child has mito...and then to be toldthere is no cure. Our hearts broke at that very moment.
From the top of his head to the tips of his toes, mito affects every part of Noah's body. He was allergic to all food until just two years ago and is fed with special formula 24 hours a day, 7 days a week, through a tube directly into his stomach.
Noah has suffered from stroke-like episodes since he was born, with each one causing significant brain damage. The last episode was in October last year which left him with a very fast heart rate. We were in and out of hospital for months trying to slow his heart rate down. Unfortunately, to this day, Noah's heart continues to fluctuate with no medication that can steady it.
And that's the hardest part of living with mito, we never know what's next.
But despite everything Noah has been through, he is ALWAYS smiling and making others laugh. He loves Star Wars and our lounge room floor is covered in Lego (which I now avoid with bare feet).
Noah is the bravest, most determined person I know. He keeps going no matter how hard things get. If you ask him how he feels, he always says, “I choose to be happy.”
Noah and I made this quick video to personally thank you for joining the Mito Movement in the Bloody Long Walk.