Very Special child, Noah, is proof that leaders come in all shapes and sizes. The 11-year-old, who was born with Mitochondrial disease, will be starting his new school year with the distinguished title of School Captain. A big advocate for diversity, Noah shares what excites him most about being a leader.
“There are kids at my school with a lot of different disabilities, and we are often not represented on TV or in movies. You just don’t see many disabled leaders, and I want to be part of changing that.”
Noah, who normally gets around in a wheelchair he calls Bumblebee, was born with Mitochondrial disease (known as mito) – a debilitating and potentially fatal condition that reduces the ability of mitochondria to produce energy.
“Mito is the powerhouse in the cell, and it affects me from the tip of my head to the tip my toes. It can sometimes make me really tired,” explains Noah.
Born at just 29 weeks, Noah had an allergic reaction to everything his parents and carers attempted to feed him at birth. At 18-months old he began to suffer from stroke-like episodes and has experienced eight metabolic strokes in his lifetime.
Although now able to eat some ‘safe’ foods, the exhausting effort it takes to eat them necessitates that he has a tube feeding him a special blended diet directly into his stomach 24-hours every day.
Despite the impact of his condition, Noah, is dedicated to living his life to the full potential and being a role model for other children who have a disability or life-limiting condition.
Noah is dedicated to showing his school community what is possible when living with a disability.
“I want to have an impact on the school community and show kids with disabilities what’s possible. I know what it is like to have a brain and body that works differently in some ways, but in many ways, we are all the same – we all want the same things – to have mates, to laugh, to learn, to be awesome!”
Noah’s family were referred to Very Special Kids in 2015, shortly after he received the diagnosis of Mitochondrial disease. For the past five years, the family have been supported by one of our Family Support Practitioners, Pauline.
“When I met Noah, he had just turned seven years old,” says Pauline. “He sat next to me on the couch, assessing if I was worthy of his time, before proudly sharing his latest Lego creations. Even at seven, Noah had an effervescence, an unmistakable energy, bubbling out of his personality.”
“He proceeded to explain to me that he had been unwell, “but just with a muggle sick – not the mighty mito sick”. The Harry Potter analogy cleverly illustrated the difference between the common cold kind of sick that everyone gets, and the very individualised challenges that Noah lives with.”
Noah’s mother Kat shares, “We love Pauline so much. She once said, “I listen to people who are hurting, and bear witness to their pain” which is such a beautiful description. But she does it with such love and wonderful intuition too. She always seems to know when to give us space to process new information or big changes for Noah, but she also knows when to keep calling.
“There are not many people you can honestly and openly talk about such darkness with and at the same time laugh about the wonderful moments. She is magical. Just knowing she is there and there is nothing I can say to her that will shock her is a big deal.”
Noah has made lifelong friendships with other children who have stayed in the Very Special Kids hospice. He has attended the camp program and enjoyed special events at the hospice.
Noah says, “I love playing with my friends at the camps. I also really love when the fire trucks and motorbikes visit. We get to go on the back for a ride, it is so much fun!”
When asked what made him want to become School Captain, Noah shared that the leaders in the Paralympics inspired him to stay active and share his voice for change. Noah takes part in a number of wheelchair sports including basketball, tennis, and powerchair soccer.
With a mixture of nerves and excitement, Noah will be taking on his new leadership role at the beginning of the school year. “I want to be a leader of my school because my future job might need me to be a leader. I want other kids like me to know that there are no limits to life and to always have fun.”
Watch Noah’s full School Captain speech here:
According to his Family Support Practitioner, Pauline, Noah has continued to capture the hearts of people around him with his playful, upfront, and determined self. “Together, Noah and his mum Kat have a connection that warms the hearts of everyone in the room. Clearly, the pleasure is all mine, in supporting this family and I vicariously share the pride that comes with Noah’s achievements. What a trooper he is!”