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.
Alana’s condition is progressive and unpredictable. Currently, she is unable to talk, and cannot walk, sit, or crawl unassisted, and has lost her hearing. She relies on a feeding tube and many medications to slow the progression of her condition.
Despite this, Alana is a social butterfly who loves attention and being around people. Alana’s mum, Toni, says her five year old is determined and cheerful and has a contagious laugh.
Toni has walked both Sydney routes with her team 'Act for Alana' and Alana was there to greet her at the finish line, smiling from ear to ear. This year, Toni will take on The Bloody Long Walk Canberra and will volunteer in Sydney.
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!