Ten cyclists passed through Armidale, Guyra, and Ben Lomond on Wednesday on a gruelling nine-day charity ride from Sydney to Brisbane to raise money for a rare genetic condition affecting one in 11 million people.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Oliver Elsworth started the “Wheelin for Phelan” ride for his eight-year-old son Ted and others who have Phelan-McDermid Syndrome, caused by deletion of chromosome 22.
READ ALSO:
His parents describe Ted as an amazing little boy – happy, smart, and determined. He was diagnosed with P-MS when he was two, cannot speak, and has several other medical issues.
“It’s something of a rocky road having a child with P-MS, or any child with a rare disease, to be honest,” Olie said.
“We still feed him; he still needs us for the toilet. We're lucky he can walk, so that definitely helps. It's like having a 12-month-old that is 8 years old, and will be 20 years old one day.
Ted is in the middle of the spectrum. Some, like a little boy outside Newcastle, can walk, and have a small vocabulary. Others, like Logan Maybon in Glen Innes, can’t walk, or talk, or really do anything to help himself. All the sufferers have autism.
P-MS affects 102 people in Australia, and around 1,600 worldwide – and the doctors are baffled.
“Nobody seems to have any answers for you,” Olie said. “There are no comforting words of wisdom. Essentially the medical profession is underwhelming in its knowledge on the subject.”
Drs. Phelan and McDermid, who studied the condition, are both in America, and heading towards retirement; no younger doctor is picking it up; and there is no specialist in Australia.
Olie and his team want to raise awareness of the condition. Supported by the Phelan-McDermid Syndrome Foundation of Australia, they are riding from the Sydney Opera House to Suncorp Stadium in Brisbane, an 1100 km ride over mountains 13 km high.
They hope to raise $5000 for the Phelan-McDermid Syndrome Australia Conference in Sydney, bring the two experts over from the US, and then allocate money towards a research grant.
“We'd love for a doctor to pick this up in Australia,” ride co-ordinator Andrew Morrison said. “One of the challenges is finding a doctor who's willing to take that up for us, so that the parents in Australia can rely on someone here in the country."
The ride, according to Oliver Elsworth, has been “pretty tough”.
“The route was chosen for its difficulty,” he said. “The whole point of it is to do something hard, because of the hard lives that all the families lead."
On Tuesday, they rode for 9 hours from Gloucester up through Thunderbolt’s Way, and over the Nowendoc Pass – one of the hardest climbs in Australia.
It got under six degrees, and was raining for the last 30 km. Several riders got early onset hypothermia.
"The weather yesterday was just awful," Olie said. "It's been tough, and we know it's going to get tougher."
On Wednesday, they rode from Armidale to Glen Innes, passing through Guyra and Ben Lomond. Last year, they went in July; it was -3, and snowed.
“It can only be better this year!”
Thursday is their longest and biggest day – an arduous 225 km, 11-hour ride to Casino.
“It would mean a great deal for people to support this journey,” Olie said, “to recognise the struggles families like ours face, and raise some funds.”
Contact Andrew Morrison on 0409 635 607, or Andrew.Morrison@suncorp.com.au.