The Bloody Long Walk – BRISBANE 18 JUNE 2023 A 35KM CHALLENGE TO CURE MITO.
Mitochondrial disease (Mito for short) is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure. One in 200 people, or more than 120,000 Australians, may carry the genetic mutations that put them at risk of developing mito or other related symptoms such as diabetes, deafness, childhood dementia or seizures during their lifetimes. There are many forms of mitochondrial disease; and can affect anyone of any age. SAs yet, sadly there is no cure.
Steven Eastman, Planning & Procurement Manager in Eagle Farm and his wife, Stella have been participating in The Bloody Long Walk for over four years now.
Noah was born at just 29 weeks. Right from the start, it was clear Noah was going to need extra help.
“Noah was allergic to everything we ever fed him and when he was just 18 months old, he started to have stroke-like episodes. At first, everyone thought it was just because he was a premmie… but as time went by and more things kept going wrong, we knew we were in a battle to work out what was happening.
As months turned into years and Noah underwent test after test, including invasive muscle biopsies, he was incorrectly diagnosed multiple times.
Even 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 doctors 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 seven. 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 seven and still relies on a tube feeding him a special blended diet directly into his stomach 24 hours a day, seven 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 twelve. He has a wheelchair he calls Bumblebee and he’s a daredevil in it!
He loves school and has wonderful friends who accept him just as he is. He loves to play wheelchair sports as much as he can.
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.
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.”
Noah’s mum, Kat, will complete her sixth Bloody Long Walk this year with her team, Noah’s Ninjas.