“Noah was born at just 29 weeks. At a young age, he began to suffer from symptoms, including failing to thrive and stroke-like episodes. My husband and I fought to find a diagnosis that would explain what was happening to our son.
“As months turned into years and Noah underwent test after test, including invasive muscle biopsies, he was incorrectly diagnosed multiple times. Noah’s biopsy results suggested he didn’t have mito – nobody knew what he had.”
“As Noah’s condition progressed with frightening speed and his unexplained symptoms increased, doctors actually became more reluctant to help. Some suggested that if we would never know, what was the point in looking for answers? There is nothing worse than feeling helpless as a parent and having nowhere to turn. At best, we were given sympathetic looks from doctors and at worst, one doctor told us that he would see him again in a year if he was still alive.
“At the age of five, we were working with a diagnosis of mito, but we didn’t get an official name of Noah’s type until he was 7. Nothing can prepare you for being told your baby has mito, but at least with a diagnosis people wanted to help us. We have the most amazing medical team around us now.
“Noah was allergic to all food until he was 7 and relies on a tube feeding him a special formula directly into his stomach 24 hours a day 7 days a week. Even now with some safe foods it’s too exhausting to eat the amount he needs so his backpack goes with him everywhere, even to bed!
“Noah is now eight. He loves school and has wonderful mates who accept him just as he is. He relies on his wheelchair and this year even got to play wheelchair tennis at the Australian Open and go surfing.
“Despite everything, he is always smiling and trying to make others smile. He loves Star Wars and playing lego and if you ask him how he feels, he says “I choose to be happy”.”
Noah’s mum, Kat, will complete her fourth Bloody Long Walk this year.