Alana's Story
As a baby, Alana failed to thrive and meet her milestones. She suffered from significant growth and developmental delay. After years of invasive testing, Alana was diagnosed with MEGDEL syndrome, an extremely rare form of mitochondrial disease.
Mito caused Alana to lose her hearing and her ability to talk. She needed assistance to walk, sit or crawl and relied on a feeding tube and many medications to slow the progression of her condition.
Sadly, Alana passed away in September 2020 at the age of seven. She will forever be remembered as a determined and cheerful girl with a contagious, cheeky laugh. She was a social butterfly who loved attention and being around people.
Alana's Mum, Toni, has taken on The Bloody Long Walk challenge every year with her team 'Act for Alana' in various locations across the country - Sydney North, Sydney East, Sunshine Coast and Canberra. Alana was at the finish line at many of these events, smiling from ear to ear. Toni will continue to take part as both a participant and volunteer in honour of Alana.
Sean's Story
Sean is the CEO of the Mito Foundation. As someone with a family history of mito, Sean knows how devastating it can be. Sean’s mother and brother both sadly passed away from the disease.
Sean’s brother, Peter was 34 when he suffered a stroke-like episode, one of the first signs of MELAS, a form of mito. Peter suffered from hearing loss, fatigue, memory loss and balance issues. He fought bravely for 11 years, but sadly passed away in 2009.
Peter’s four siblings, including Sean, have all tested positive for a genetic mutation that causes MELAS.
Noah's Story
A Story of courage, resilience, and joy. Born at just 29 weeks, Noah’s journey has been anything but easy.
From the very beginning, he faced significant challenges.
"Noah was allergic to everything we ever fed him, and at 18 months, he started having stroke-like episodes. Doctors initially attributed it to his premature birth, but as more complications arose, we knew we had to fight to find answers."
For years Noah spent a significant amount of time in hospital and despite him being seriously unwell it was hard to work out one reason. As he collected new diagnoses and endured countless tests we still had no idea why our Noah was declining right before our eyes. Each and every single system in his body started to fail, something we later learnt is not unusual for mito.
"As Noah’s symptoms worsened, some doctors became reluctant to continue searching for answers. It was devastating. One doctor even said, 'See you in a year… if he's still alive.'
Of course we knew that as long as Noah was fighting for his life we would continue to do the same.
Finally, at age five, Noah was given a preliminary diagnosis of mito. At eight years old, doctors confirmed the specific type of mitochondrial disease. With the diagnosis came new support, and Noah now has an incredible medical team by his side.
For years, Noah was allergic to all food and still depends on tube feeding. His special, blended diet is delivered 24/7 through a feeding tube, with his backpack accompanying him everywhere—even to bed. Although he can now eat some “safe foods,” maintaining enough nutrition through eating alone is exhausting.
Despite these challenges, Noah’s zest for life is unstoppable. Now 14 years old, he proudly navigates the world in his wheelchair, affectionately named "Bumblebee." A daredevil at heart, Noah loves wheelchair sports, school, and spending time with his amazing friends who embrace him just as he is.
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.
Mito has taken a lot from Noah, especially recently, but it has never taken his spirit. 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."