Nathan’s Big Ride – Raising Awareness of Rare Genetic Condition

At 30 years of age Nathan McDowell is the oldest living person with Pelizaeus-Merzbacher Disease (PMD).

PMD is a rare type of leukodystrophy that affects the nervous system (predominantly in males) and results in impairment to movement and coordination, muscle spasms, delays in developmental milestones, loss of motor abilities and the progressive deterioration of intellectual function.

There are two types of PMD with the more severe type being evident from birth, and resulting in a life expectancy ranging from a few years to the mid-teens.  Nathan is one of the few people in the world who have battled the condition and lived into their thirties.

Nathan also suffers from Cerebral Palsy and only started walking late in his development before being confined to a wheel chair, but despite this Nathan has had a life long goal to undertake a long distance ride on his hand-cycle.

He has been training and working hard in preparation with his support worker Matt Bell, and from March 8^th to 13^th will ride the 120 kilometres from Noosa to Sutton’s Beach in Redcliffe, for what the pair have dubbed ‘Nathan’s Big Ride’.  Nathan has also been helped out by his support network – father Gavin, partner Robin, sister Danielle, as well as the disability support service Holistic Horizons.

Nathan and Matt told 96five’s Ken & Nicky that although there were the usual daily challenges, there were some unique issues that Nathan has to overcome to achieve his dream.

“The challenges are that his legs are often very stiff” said Matt, “he has trouble getting on and off his cycle so he needs help with that.  Because he pedals with his hands and arms going up and down hills are a bit of a challenge so he needs a bit of help with that.”

Matt said that Nathan was an inspiration to others who are living with disability.

“He has an indomitable spirit, he works hard, he doesn’t give up and he encourages people.  He wants to talk to everybody, and he inspires others with disability to live their best life.”

Last year Nathan’s father went through chemotherapy after a cancer diagnosis and this brought home to everyone the fact that Nathan would need to think about his future.

Although he receives NDIS support, Nathan also has a goal to own his own house, so part of the fundraising efforts of the ride will help him in that area.

“Since he is not able to have employment, he does rely on the support of others” said Matt.

Nathan will also be raising funds and awareness for Leukodystrophy Australia and other rare genetic conditions.

Matt said that he was immensely proud of Nathan’s efforts as the starting date gets closer.

“The main thing is that he’s had this goal for a long time – to ride his hand-cycle over a long distance, so this is great for his well-being.  Doing this ride is what means everything to Nathan at the moment.”

If you’d like to support Nathan’s big ride you can make a donation at his GoFundMe Page, or follow him on Facebook and give him an encouraging word.

Nathan’s Big Ride is sponsored by Holistic Horizons, and supported by The Breakfast Club Redcliffe.