Mel & Andrew hit rail trail
IN NOVEMBER last year Mel Behrens-Macaulay and husband Andrew Macaulay rode more than 1300km from Hervey Bay to Sydney on The Bloody Long Ride, and last week rode the Brisbane Valley Rail Trail.
The two-week ride raised more than $3800 for the Australian Mitochondrial Disease Foundation, and culminated in them joining 2000 people on The Bloody Long Walk from Maroubra to Circular Quay in Sydney - one of seven such fundraisers the AMDF hosts each year.
Mel has mitochondrial disease, diagnosed almost two decades after she began to show symptoms, and is the only person with the disease she knows of able to complete the walk unassisted.
Mitochondrial disease is a chronic genetic disorder that occurs when the mitochondria in a cell fails to produce enough energy for the cell or organ to function. In Mel's words, mito can "affect any organ, at any stage and at any age”. Once diagnosed at 37, she was told by a doctor to prepare for life as a blind person.
Such a complex disease comes with more than its share of complications, least of all a successful diagnosis.
Roughly one in 4000 will present with mito, but with symptoms varying so widely between cases it can be almost impossible to successfully diagnose. There is currently no cure.
"It's quite a complex disease, they call it a masquerader,” Mel said.
"It's a really hard disease to diagnose, and was one of the reasons we wanted to ride through the regional communities (on The Bloody Long Ride) because a lot of doctors haven't heard of it before.
"Mito isn't as rare as we think it is, many go undiagnosed or misdiagnosed. Many carry the genetics and for reasons unknown it doesn't trigger -- which is a good thing - but it may be passed to their children or grandchildren.”
Mel pushes herself to the physical limit because she can, while others with the disease are not as fortunate.
"Everywhere I go it's hard, you're talking about babies and children dying,” Mel said.
"People ask why I push my body so hard, and to be honest it makes me feel good. I can say 'hey I can do this' because I don't know if I'll be able to do it tomorrow.
"There's so much death and disability, and so much heartache that for me to be able to say to people 'hey I know times are tough, but if we enjoy what we can do today, whatever happens tomorrow happens' is how I want to live.”
The Maryborough couple spent time in Blackbutt, Kingaroy, Murgon and Goomeri to name a few, and were blown away by the scope and scenery afforded to them by the rail trail.
"When you drive from town to town on a country drive you don't really experience the country, whereas on the rail trail you experience everything - the change in temperature, smell in the air - things you miss sitting in a car,” Mel said.
"The rail trail is so relaxing, there's food and water, and you don't need to spend a lot of money. I think that makes it really affordable for families.”
Andrew agreed, and praised the rail trail as more than just a scenic journey.
"It's a brilliant community asset, there's so many people using it. Small communities like Linville, I don't think they'd be doing as well without the visitors (the rail trail brings),” Andrew said.
With work commitments calling, the couple had to call time on their rail trail adventures. But Mel already has plans to return in 2017.
"We're doing recreational rides now because in 2017 we want to take a group of people along the rail trail to Ipswich and into Brisbane to do The Bloody Long Walk with us,” Mel said.
"We'll leave that group in Brisbane and ride unsupported with our little tent from Brisbane to Canberra and to The Bloody Long Walk there as well.
"It's just fabulous to see people out there.
"Thirty-five kilometres is challenging for anyone to do, so it's great to see the support in the community and people pushing themselves.”