Take a step towards a cure for mito on 4 August
It started as a promise to her daughter Rose, and now Margie Lingard’s mission to find a cure for mitochondrial disease (mito) will see thousands of people trek the Northern Beaches coastline on 4 August for the 35km Bloody Long Walk.
This annual event is in its 12th year, and organisers hope to raise over $330,000 for the Mito Foundation. Mito is a debilitating, potentially fatal genetic disorder that robs the body’s cells of the energy they need to function properly. It can strike at any age, but most children diagnosed with mito die in the first five years of life.
Margie and her husband Doug of Mona Vale have sadly lost two children to the disease. Their son, Alex, died at seven, after he had convulsions which led to a coma. Symptoms leading up to his death included twitching fingers. At that time, doctors didn’t know what had caused his death. “We just drew a blank,” Margie says. “We even sent tissue samples overseas.”
Then when their daughter Rose was 20, she started to suffer from convulsions. In the time between Alex passing and Rose developing symptoms, the human genome had been tracked. Rose was diagnosed using genetic testing, and a neurologist who’d cared for Alex suggested that he’d had mito too. “That was the first time we had heard the words, and he was spot on,” Margie says.
Margie and Doug have a ‘Walking for Rose’ team in honour of their daughter
She explains that mito is a complicated illness. “It’s not like measles or mumps where you have standard symptoms,” she says. “Every case of mitochondrial disease is different.
“When Rose became sick we promised her we would do everything to find a cure and we set up a foundation to raise funds and promote research,” Margie says.
Doug established the Mito Foundation in 2009 with Margie’s help, and it has achieved much in that time, including educating the medical profession on the disease; providing resources and support to sufferers and their families; contributing $8 million in funds to medical research; and lobbying to successfully have Maeve’s Law passed, legalising mitochondrial donation, an IVF-based technique which offers hope for families with certain forms of mito.
Sadly Rose died in 2017, but Margie has many memories of Rose volunteering at the Bloody Long Walk. “Rose went about her life with the most amazing determination and enthusiasm,” Margie says.
Margie, Doug and their friends will participate in this year’s event with their team, ‘Walking for Rose,’ and she encourages others to join in the fun of the day.
Along the coastal walk there are regular checkpoints featuring mito facts, and volunteers to cheer on participants.
When: 6.30am, Sunday 4 August
Where: Governor Phillip Park, Palm Beach; ends at Manly Promenade
Register: bloodylongwalk.com.au
