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 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 favourite thing is to make people laugh, with Star Wars coming a close second! But behind his gorgeous smile, Noah bravely fights mito. In his nine short years, he has undergone countless medical procedures. He has had multiple stroke-like episodes, which occur without warning, each one causing significant brain damage.
Despite being fed by a tube and having to rely on his wheelchair, Noah is determined to live life to the full. Ask him how he feels and he says “I choose to be happy.”
“He’s my world, all I want is to find a cure for my boy.” – Kat, Noah’s mum, will take on The Bloody Long Walk for the fourth time.
Register today to walk 35km and help find a cure for mito!