DANE Williams doesn’t profess to being an elite cyclist.
However, the Macquarie Hills man will pedal approximately 135 kilometres to put a smile on a little boy’s face in the coming months.
Aberdeen Tigers legend Sean Millwood and his partner Amy Hickman’s three-year-old son Reggie suffers from an extremely rare disorder called Phelan-Mcdermid Syndrome (PMS).
So touched by the youngster’s plight, Mr Williams has decided to don the lycra and ride from Cardiff to Muswellbrook on Friday, July 19, to not only raise awareness for PMS but funds for the family to support their ongoing cost of living while dealing with the lad’s condition.
“I’ve known Amy since I was 12 – more than 20 years,” he said.
“So, it’s a cause close to my heart.
“I’m aiming to surpass the $10,000 mark.
“Already, I’ve received $600 in donations [on the first day].
“I have had interest from other people to ride with me, too, which is fantastic.
“Even though there’s still a bit to do, in regards to the final details when I arrive in town, I’m also hoping to attract some sponsors on board.”
PMS only has 2100 cases confirmed on an international scale – and just eight in Australia.
“To put it in perspective, Reggie is 1 in 3.85 million people worldwide and 1 in 3.075 million Australia-wide with PMS,” Mr Williams said.
“It’s a rare genetic condition caused by a deletion or other structural change of the terminal end of chromosome 22 in the 22q13 region or a disease-causing mutation of the SHANK3 gene.
“In fact, PMS is sometimes called 22q13 Deletion Syndrome.
“It can cause a wide range of medical, intellectual, and behavioural challenges.
“The most common characteristics found in those with PMS are intellectual disability of varying degrees, delayed or absent speech, symptoms of autism spectrum disorder, low muscle tone, motor delays, and epilepsy.
“There is currently no cure or treatment specifically for PMS, but they know how to manage many of the symptoms.
“Thankfully, researchers are working hard to improve our knowledge of PMS and to find drugs and therapies that can benefit people affected by PMS.”
It’s not the first time Mr Williams has hopped on a bike to assist someone else.
“For the past two years, I’ve ridden a bike at my local gym to raise money for Ronald McDonald House,” he said.
“When my father was hospitalised, I saw what that not-for-profit organisation did to help seriously-ill children and their families.
“And, I’ve amassed just under $10,000 for them.
“In 2019, though, I decided to change it up and raise some money for something much closer to home.
“I know the trek to Muswellbrook won’t be easy.
“In the past, I rode a gym bike for 12 hours straight.
“So, I’m hoping this will only take about eight.
“It’ll definitely be different, riding outside in the elements.
“But, I’m keen to do whatever I can for Amy, Sean and Reggie.”
To support Mr Williams’ quest, or make a donation, visit https://www.gofundme.com/6ziw4qw?fbclid=IwAR2IHHIdannopPEXKk197c2MAPBoPgYupjMXcD8mFQKQHXxGRJzFRYslrrI