July 20th, 2024

Bikers bring smile to six-year-old girl battling rare disorder

By BRENDAN MILLER on June 18, 2024.

On Saturday more than 260 supporters raised money for six-year-old Hailey Bonville, who has been battling Rett syndrome since she was 18 months old, during the Ridin' For Kids Foundation's Ride for Rett syndrome. Hailey is pictured with her mother Vanessa outside Irvine Hotel on Saturday.--NEWS PHOTO BRENDAN MILLER

bmiller@medicinehatnews.com

Hundreds of motorcyclists from across Alberta and parts of Saskatchewan hit the highway with their hogs, choppers and beasts to raise money for a six-year-old Medicine Hat girl who is battling a rare neurological disorder.

At the age of 18 months, Hailey Bonville was diagnosed with Rett syndrome, a genetic neurological and development disorder that causes progressive loss of motor skills and language. The disorder is considered rare and primarily affects females.

Due to her condition, Hailey in non-verbal and requires 24-hour care as she is prone to seizures. On May 23 paramedics were called to assist Hailey following a serious seizure.

Hailey’s father Alex says unfortunately many children who are diagnosed with Rett syndrome don’t live past the age of 20 years old.

“You have to be prepared for that and you have to wake up every morning to see her face ,and it’s a tough pill to swallow,” says Alex. “Every day it’s an absolute blessing to have her in this world.”

The ‘Ride for Rett Syndrome’ was held Saturday by Ridin’ for Kids Foundation to help raise money to purchase Hailey’s family a wheelchair-accessible van to make everyday tasks and long trips to the Children’s Hospital in Calgary easier.

Hailey is bound to a wheelchair and her condition leaves her with extreme troubles communicating, moving and walking. Hailey’s mother Vanessa says it’s often a difficult task to transport her daughter in their family vehicle.

“This accessible van will help because she’s really comfortable in her chair,” explains Alex. “And we can travel and we can go to the mountains, we can go sightseeing with Hannah (Hailey’s older sister) as well. The van is going to help substantially.”

Hailey also wears a back brace for scoliosis and receives proper support by sitting in her wheelchair.

“It is a physical challenge just going to different locations, just that in and out” says Vanessa. “So having an accessible van so we can actually wheel her out of the van and up into the house will be huge for her body and not put strain on her back.”

On Saturday morning, Hailey was the life of the party at the Irvine Hotel during a pancake breakfast before the ‘Ride for Rett Syndrome’ kicked off, as dozens of bikers wearing leather patches and sporting large beards and tattoos spent time talking with the six-year-old and her family.

“She is such a little social butterfly, she loves people and attention,” said Vanessa. “She does have some sensory issues with the sound and it being hot but despite it all she’s getting attention and she loves it.

“I think her knowing all these people are supporting her just brings out a smile.”

The nonprofit took a group photo of the all motorcyclists and the Bonville family before revving up their engines and hitting the highway for the day-long ride, which stopped in Bow Island, Hay Campground and the Tilley Hotel before arriving at DayzOff Pub for charity auction and live music.

At its peak organizers say more than 260 supporters participated in Saturday’s ride and the largest gathering of bikers occurred at the Tilley Hotel.

“We’re astounded and blessed and I can’t say enough that the community has come together,” said Alex. “Sincerely overwhelming, considering we never ask for help, we never get help, we just do what’s best for Hailey.”

“It’s a big community that’s coming together for a little girl with something huge,” said Vanessa. “So there have been many tears, all of the amazing messages that everyone has given for Hailey, all the support and the community coming together just riding for kids, such an amazing event and an amazing foundation.”

Ridin’ for Kids Foundation is a local non profit that works with school divisions as well as health services and the Make-A-Wish Foundation to host a life-changing bike-ride fundraiser for one child each Father’s Day weekend, and last year raised more than $42,000 to support Abbi Ulmer, who lives with complex regional pain syndrome.

This year organizers are calling the ride a “huge success” and would like to thank everyone who participated in the ‘Ride for Rett Syndrome,’ as well as businesses, companies and individuals that donated money or items for the silent auction.

On June 25 the nonprofit plans to present the grand total raised in this year’s ride to the Bonville family at the Irvine Hotel during its weekly Biker Tuesday Show & Shine.

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