Six-year-old Hailey Bonville rests after suffering a seizure during school.--SUBMITTED PHOTO
bmiller@medicinehatnews.com
Six-year-old Hailey Bonville has been battling Rett syndrome ever since she was 18 months old. The genetic neurological and development disorder is rare and causes progressive loss of motor skills and language, and primarily affects females.
Hailey’s mother Vanessa describes her daughter’s condition as a mix of symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorder, and requires 24-hour care.
Her condition also provokes seizures. On May 23 paramedics were called to assist Hailey following a serious seizure, the second she’d suffered from in one week.
In a letter on Facebook, Hailey’s father Alex writes from his daughter’s prospective who is unable to communicate:
“My parents do everything for me. They take turns feeding me, bathing me and making sure I am okay. I can’t tell them if my body hurts or if I have something in my teeth or if I need the washroom. So I get grumpy and use my big voice to tell them but it takes time to figure it out and they eventually do.”
Since her diagnosis, Hailey’s family has travelled to the Children’s Hospital in Calgary several times for appointments and to meet with her spine specialist.
Due to Rett syndrome, Hailey has extreme trouble communicating and difficulty walking, and requires a wheelchair for mobility.
To help make everyday tasks easier for Hailey’s family, hundreds of bikers will hit the highway, engines roaring, with a goal to raise enough money to purchase a wheelchair-accessible van during the fourth annual Ridin’ for Kids Foundation ‘Ride for Rett Syndrome.’
“It’s going to be able to help the family all travel together and be comfortable,” says Char Rosse, co-founder. “So if they want to go out to the park, it’s going to be comfortable for them to all go to appointments.”
The grassroots foundation works with local school boards, health services and the Make-A-Wish foundation and hosts a life-changing fundraiser for one child each Father’s Day weekend. Last year the foundation raised more than $42,000 to support Abbi Ulmer, who lives with complex regional pain syndrome.
On Saturday, rain or shine, approximately 300 bikers riding a variety of motorcycles from across the province, as well as B.C. and Saskatchewan, including veteran paratroopers from Edmonton, will take part in the charity ride that begins with a pancake breakfast starting at 9 a.m. at the Irvine Hotel.
Kickstands go up at 11 a.m. as bikers will depart the hotel in groups and rumble down the highway stopping at Bow Island, Hay Campground and the Tilley Hotel before arriving at DayzOff Pub for a silent auction and live music.
Several local businesses and individuals have donated dozens of items toward the auction, including outdoor, sports and fishing equipment, motorcycle accessories, gift certificates and more.
“I can’t thank the community enough,” says Ivan Reimer, co-founder. “With all the donations and all the love and support that has been coming. Not just for Hailey, but for Ridin’ for Kids. It has been overwhelming this year as it has been every year, but this year for some reason has been exceptionally overwhelming.”
Monetary donations are still being accepted until Saturday at noon and can be sent over email to ridinforkids@gmail.com, or by reaching Ivan Reimer at 780-897-2212. Earlier this year the foundation became a registered charity and able to provide tax receipts for all donations.
Editors note: An earlier version of the story had a misspelling in the email for donations.
