Nathan McDowell - Nathan's BIG Ride 2023

Encouraging Nathan McDowell on his journey of training on his hand cycle for his third big ride from Woorim on Bribie Island to Victoria Point on the MBRC (Moreton Bay Cycleway) Trails – 136 KM’s over 6 days – His longest ride so far.

Nathan is 33 years old, has Cerebral Palsy and was diagnosed with Pelizaeus- Merzbacher disease at the age of 17. Pelizaeus-Merzbacher disease (PMD) is a rare X-linked genetic disorder affecting the central nervous system that is associated with abnormalities of the white matter of the brain and spinal cord. It is one of the leukodystrophies in which disease is due to abnormal development of one or more components (predominantly fats or proteins) that make up the white matter (myelin sheath) of the brain. The myelin sheath is the protective covering of the nerve and nerves cannot function normally without it. In PMD, many areas of the central nervous system may be affected, including the deep portions of the cerebrum (subcortical), cerebellum, brain stem and spinal cord. Signs may include the impaired ability to coordinate movement (ataxia), involuntary muscle spasms (spasticity) that result in slow, stiff movements of the legs, delays in reaching developmental milestones, late onset loss of motor abilities, and progressive deterioration of intellectual function. The neurologic signs of PMD are usually slowly progressive. https://rarediseases.org/rarediseases/pelizaeus-merzbacher-disease/

Nathan started walking late in his development, which only lasted a few years until he was confined to a wheelchair for the rest of his life as the Cerebral Palsy took hold. He is able to stand on his legs with the assistance of a walker for a very short period of time, however his leg muscles are very stiff and he’s unable to bend his legs easily. He lives with constant abdominal pain as a side-effect of how he must live with his disease, and everyday tasks are a mammoth effort for Nathan who requires constant support.

In spite of his daily challenges, Nathan is one of the most charismatic, conversational, and friendly people you’d ever meet. Always charming anybody and everybody with his questions of life and desire to get to know you, and just a bit cheeky with a never-ending smile. Nathan loves to be with people and has time to chat with anyone as if they were a life-long friend. Nathan had a long-time goal to ride a long distance on his hand-cycle, and his desire was to raise funds to inspire research into PMD – Nathan would like to be cured of this insidious disease as anyone would be. Nathan achieved this dream in March 2021 when he rode his hand-cycle from Noosa to Redcliffe on selected cycle trails. Nathan gained local published and radio media coverage and trained with his key support worker Matt. He rode over 1000 km’s in the year leading up to his ride. He totalled 115 KM’s over six days in March 2021 with the help of his dedicated family, wonderful volunteers and the team from Holistic Horizons Support Services. It was truly an unbelievable effort against all odds. We are very proud of him.

In the 12 months before his Noosa to Redcliffe ride, Nathan’s father was diagnosed with cancer, which thankfully he survived. It was decided in view of this that funds raised should go towards Nathan’s future provision with 10% given to Leukodystrophy Australia as there is no research into PMD in Australia, and very little research world-wide.

The day Nathan rode into to Sutton’s beach he said he wanted to do it again. So, preparations began for a ride in 2022. It was much harder this time around even though the distance was shorter, and the ride was delayed. Nathan’s diseases are degenerative – He has had numerous specialist appointments, sickness, infections, a stay in hospital and Covid not to mention the extra weather events and flooding we experienced that year. Yet Nathan was determined & achieved his goal a second time Kingaroy to Redcliffe on selected trails – 85 kms over 4 days.

It was then proposed that the “Ride for Nathan” be run annually, for as long as Nathan can ride, and then continued as a legacy to Nathan for other differing ability participants to continue. Nathan, his family, and the team are especially keen to have greater research into PMD become a reality. Nathan’s immediate need is his own modified van. Nathan finds it ever harder to get in and out of regular vehicles, and the risk of injury to family and support workers is real when helping him into and out of a vehicle. Any funds raised this year would assist with that need.

Follow along with video updates on Facebook, as he trains around in his local area for his third Big “Ride for Nathan” and give him a thumbs up if you see him, or comment for encouragement!