Vanessa Hall  

Editor  

ON SUNDAY, June 1, the team from Coolum’s Joel Hood Real Estate will be lacing up their most comfortable shoes and tackling the 35km Bloody Long Walk, which will start at 6 am in Coolum’s Tickle Park and end in Mooloolaba.  

The walk is a vital fundraiser and drives awareness for mitochondrial disease (mito) –  a genetic disease which affects the way we use energy, and for Joel and Sarah Hood, their youngest daughter, Maeve, is affected by the disease; however, at only nine years old, she inspires them every day.  

Sarah explained that Maeve was diagnosed at just 18 months of age with ‘Leigh’s disease’ – a rare and severe form of mitochondrial disease.  

Leigh’s disease affects Maeve’s ability to move, talk, eat, and even breathe on her own, but it has never dimmed her spirit. 

‘With Maeve, she is fed through a feeding tube, she is currently only able to walk really short distances, she can’t talk and is non-verbal, and she has splints to help her walk, however, we do expect that in a year she will be down to a wheelchair permanently.”  

Joel went on to say that they were told that Maeve would likely only live to be between five and eight years old.  

“She just keeps going, she is doing very well, and she is at Nambour Special School, so she is doing exceptionally well.” 

The Hoods also explained that raising funds and awareness for the Mito Foundation was vitally important.  

“We started fundraising for the foundation seven years ago, and as a family, we have raised around $300,000,” Joel said.  

The Bloody Long Walk is operated by the Mito Foundation, and 100% of profits go directly to support people impacted by Mito, research into treatments and cures, and raising awareness of this disease.  

MAEVE’S LAW 

The family have also been advocates and were instrumental in having a law passed, ‘Maeve’s Law’, which allows for genetic testing.  

Everyone has mitochondria in their cells, and they provide 90% of the energy our bodies need to stay alive; however, when these mitochondria don’t work properly, it can be life-threatening, and this is known as mito. 

“Parents can now remove the genetic defect through IVF, and the Federal Health Minister at the time, Greg Hunt, reached out and helped us, and it was passed in April 2022,” Joel said.  

The  IVF-based assisted reproductive technology has the potential to prevent mitochondrial disease in babies born to mothers who may otherwise pass on the disease. 

In Australia, between one in 5,000 and one in 10,000 people develop severe mitochondrial disease during their lifetime. Around one child per week is born with a severe form of the disease. 

Introducing the IVF testing could prevent some children from suffering from this life-threatening disease and reduce the burden of mitochondrial disease into the future. 

SUPPORT THE HOOD’S LONG WALK 

By joining Joel Hood Property for this year’s Bloody Long Walk, you’ll be walking for Maeve and the many other children and families affected by this life-altering condition. 

“Now we keep on raising money because it goes to families, and now it’s also about giving people an understanding of what this is,” Joel said.  

Whether you walk the 35km, donate, or simply share their story, you’re helping shine a light on mito and fuelling the hope for a cure. Please visit the following link to show your support or send off the team at Tickle Park on Sunday, June 1, from 6 am –  https://event.bloodylongwalk.com.au/fundraiser/joelhoodproperty 

Visit mito.org.au for more information about the Mito Foundation.