Canada, On.:Motorcycle club revved to support youngster with a rare disorder

Warriors Hardrock are hitting the road this month to support Lydia Allard, 5, who is fighting against a rare muscular disorder.

The club, which is the Timmins chapter of Warriors Kanata, is inviting motorcycle enthusiasts to join in for a ride and help fundraise for Allard’s medical needs.

Lydia’s father, Tyler Allard, explained, “Her condition is called nemaline rod myopathy. It’s a rare muscular disorder. It affects one in 50,000 of the population. Basically she has no muscle tone. She is trached (on a trachea tube) and on a ventilator 24/7.

“She requires nighttime nursing. She cannot swallow, so she requires oral suctioning and has a G-tube, (gastronomy tube) so all food is given through that directly into her stomach. We have to move her constantly in and out of her wheelchair as her muscle tone is very limited. My wife was forced to become her primary caregiver when she was born as she requires constant supervision.”

He said for Lydia’s journey against this disorder requires a lot of daily medical expenses. And the money raised from this fundraiser will help them saving up for an electric wheelchair and a modified bath as she has outgrown her previous one.

“As with all medical equipment, it is very expensive and the money raised will go directly saving for the electric wheelchair and modified bathtub.”

The fundraising ride for Lydia will be held on Saturday, Aug. 15.

The ride will begin at 11 a.m. from J&B Cycle and Marine and the participants will return to that location when they are done.

Jason Fasciano, secretary with the Warriors Hardrock, said the ride will include a drive by Lydia’s house to show her support, followed by a stop in Cochrane and Iroquois Fall ending at J&B in town.

The entry fee to participate in the ride is $30 per person and $40 per couple. He said the event will also include draws and 50/50 prizes.

Fasciano and his team members are happy to be a part of this fundraiser which is for a good cause he said.

Tyler said, “Lydia has a great personality and has surpassed all of our expectations to date. Though she cannot walk, and has very limited muscle tone, she is able to talk and show us her personality. Sometimes, she is overshadowed by all of her complex medical needs but is like any other five year old when it comes to loving movies, loves reading and going for walks (in her wheelchair) with us.”

Fasciano doesn’t have a goal in terms of the fundraiser he said. They’re just hoping to receive as much as support they can from the public.

He said they’re always looking forward to help someone in the community.

The Warriors Kanata, a non-profit motorcycle club with chapters in both Timmins and Sudbury, have aimed to help needy in surrounding and communities with fundraising campaigns.

Along with the Timmins riders, members from the Sudbury chapter of the motorcycle club are expected to join the ride for Lydia.

Make sure you have subscribed to our Facebook page or Twitter to stay tuned!

Source: The Daily Press Timmins