June 15, 2022
Nathan McDowell has been in training for a year for a 120km fundraising bike ride which will start in Kingaroy on June 29.
That’s not a bad effort in itself, but Nathan, 32, is no ordinary cyclist … he has spina bifida, cerebral palsy, is legally blind and has a genetic condition – Pelizaeus-Merzbacher Disease (PMD) – that’s so rare almost no one, including many doctors, has heard about it.
It’s that last fact that Nathan and his family hope to change with the ride.
PMD is a rare, progressive, degenerative central nervous system disorder which has no cure.
It is a type of leukodystrophy. Nathan was officially diagnosed when he was about 16 years old but he has been confined to a wheelchair since childhood.
There are believed to be about 16 families in Australia affected by PMD, Most cases are children which make’s Nathan’s condition even more rare.
Building upper body strength is key to Nathan’s health, something that the regular training with his heavily modified top handcycle helps.
Drew Cason, from disability support service Holistic Horizons, said Nathan had originally dreamed of riding the bike from Brisbane to Sydney, but realistically that goal had to be cut back.
Last year, Nathan completed a fundraising ride from Noosa to Redcliffe, about 110km.
How was it? “Pretty good. It was mostly downhill!” Nathan joked in Kingaroy during a preliminary visit to the region on Tuesday.
Nathan and Holistic Horizons have set a goal of doing one major ride a year, something which Nathan is looking forward to.
His Kingaroy ride will again be fundraising to assist Leukodystrophy Australia, an association which aims to provide information, support and advocacy for families affected by leukodystrophy and encourage leukodystrophy-related research.
Sadly, PMD research is only being undertaken in a couple of locations around the world, with none being done in Australia at the moment.
Nathan also hopes to one day buy an electric bike to make his rides easier.
The latest bike run will be completed in four stages, the first two on the South Burnett Rail Trail:
- Day 1 – June 29 – Kingaroy to Tingoora via Memerambi and Wooroolin
- Day 2 – June 30 – Tingoora to Murgon via Wondai
- Day 3 – July 1 – Open Ride Day. Community riders, including UQ researcher Dr Joel Dulhunty on a penny farthing, will join Nathan for a loop ride from Caboolture to Caboolture via Wamuran
- Day 4 – July 2 – Shorncliffe Pier to Suttons Beach at Redcliffe.
Nathan has received incredible support over the years from his family, especially his father, speedway driver Gavin McDowell, who takes him to places that he would normally never get the chance to see.
“Gavin will throw him over his shoulder and carry him up stairs,” Drew said.
Gavin carried Nathan to see the Sandy Cape Lighthouse on Fraser Island and trekked through mangroves with him so he could see the USS Ronald Reagan when it visited Brisbane in 2019.
Nathan was also the inspiration for Drew and his wife Kylie to start their own business, Holistic Horizons, at the end of 2014.
Drew believed Nathan deserved better support than he was getting from his then-service provider so started another.
Holistic Horizons has now grown to support many other people with disabilities.
Kingaroy Caravan Park has offered the McDowell family and Nathan’s support team free accommodation for the South Burnett legs of the ride.
Footnote: If Nathan’s health problems weren’t enough for the family, Gavin is in remission from Stage 4 throat cancer, his sister Danielle has five brain tumours and his stepmum Robin has been treated for kidney cancer.
[Photos below are courtesy of the McDowell family]