Noah's story

Story image

“Very Special Kids are there for the really hard stuff but also for some brilliant times, especially the camps.”

- 14-year-old Noah who has mitochondrial disease

Noah, who normally gets around in a wheelchair he calls Bumblebee, was born with mitochondrial disease – a debilitating and potentially fatal condition.

Noah explains, “If you remember back to science at school, mitochondria are the powerhouse of the cell. So, the energy in my cells don’t work properly, especially in places that need a lot of energy, like my brain. Nothing works properly from the top of my head to the tips of my toes.”

“It’s not the only thing about me, though. Last year I was school captain, I love Star Wars and playing wheelchair AFL for Richmond.”

Thanks to support from across our community, for the past five years, Noah’s family has been supported by Very Special Kids.

“Very Special Kids is there for the really hard stuff but also for some brilliant times, especially the camps. I love meeting other people like me and having fun, all at the same time,” says Noah.

His mum Kat adds; “Very Special Kids is another light in our darkness. They have walked with us through many of our biggest moments… I can’t tell you how essential it is to have someone who will listen to you vent. Who isn’t shocked, or put off, or want to run away from your experience. Or who will offer you a shoulder to cry on knowing tears are meant to be cried.”