More than 1,000 Canberrans will walk 35 kilometres today to raise awareness of mitochondrial disease, in the Mito Foundation's Bloody Long Walk.
Mitochondrial disease — or mito, as it's commonly known — is a genetic disorder that affects mitochondria, the powerhouse of the cell that provides energy to the organs and keeps them functional.
The disease causes organ failure and can be fatal. It has no cure and no effective treatments.
Those walking today hope to raise awareness for the Mitochondrial Donation Law Reform Bill, or Maeve's Law, which will be debated in the federal house of representatives this week.
Maeve's Law would legalise mitochondrial donation through in vitro fertilisation, allowing people with mito to have biological children without risking passing on mitochondrial DNA defects.
Families hope for change
Nicole Baldry knows all to well the grief of having a child with mito, after her son Henry passed away from the disease at just nine days old.
"Our little boy Henry would be six in March," she said.
"We should be getting ready for kindergarten, but instead we're doing another Bloody Long Walk.
"[It] is a way to make people remember that I have more than the children that are living.
Nicole and her husband Carl are walking in Canberra today, and hope it will help see Maeve's Law passed.
"Maeve's Law offers so much hope for families like ours that have been affected by the devastating impacts of mito," she said.
"The whole mito community has our fingers crossed that we will finally hear some positive news about Maeve's Law before the end of this year.
"After years of consultation, review and waiting, the passing of the Law would be the best possible Christmas present for thousands of Australians."
'Thinking of Dad'
It isn't just parents who are participating in the Bloody Long Walk today, Gregor Sutherland is walking in memory of his father Alistair who died of the disease last year at 74.
Gregor has completed the Bloody Long Walk before, but this time he will be doing it without his father.
"Last time I did the walk he couldn't make the distance, so he went around in the car with my wife and stopped at various points," he said.
"Our team name for this year is Team Atta, that was the name his grandkids called him — Atta.
"This walk is an important reminder of the impacts of this devastating, but still little-known, disease and the opportunity to raise awareness and funds for families affected by mito and medical research."
