by Adam Gault
An upcoming fundraiser to be held at the Essex Branch of the Royal Canadian Legion (Branch 201), for a young Essex boy born with a rare medical condition, has sold out.
The event will take place just days before he heads to Philadelphia for surgery.
Four-year-old Alex Bondy was born with Arthrogryposis Multiplex Congenita (AMC), a congenital joint contracture, which impacts his wrists, elbows, knees, and ankles.
“[In Ontario] there wasn’t much the doctors said they could do for him,” his mother, Tonya Harrison, explained. “They basically said they’d try to work on the ankles, the two clubbed feet, but they had no luck, and it was basically ‘buy a wheelchair, have a nice life, there’s not much we can do for him.’”
Not willing to accept that for an answer, the family researched additional treatments and specialists for AMC, and discovered that the Shiners Hospital for Children Philadelphia was one of the world’s leading authorities on the condition.
“The greatest piece of information we got, was that he has an excellent chance of one day walking,” Harrison said, adding Alex has since had surgeries on both his arms and elbows in Philadelphia. “He could not bend his arms - his arms were locked straight. So, now that means he can bend his arms, therefore, feed himself, clean himself as he gets older.”
Although Shriners Hospital for Children performs these procedures at no cost to the family, there are additional travel expenses, and accessibility equipment and modifications that need to be made to the family home.
Alex also has an additional surgery scheduled this coming June 6 to address issues with his hips, and with that, his parents will once again need to travel to Philadelphia for the procedure.
“His feet are basically not facing forward. The skeleton is fine, but the soft tissue keeps his legs from being able to face forward, and that’s at the hip level,” Harrison explained of next week’s surgery. “They’ll do a tendon release in the hip, so that should enable him to have his feet facing forward, which is another step to be able to walk.”
With that in mind, local musician and distant Harrison relative, Gord Wright, organized an all-day musical jam and dinner fundraiser to take place at the Essex Legion on June 2, from 1 to 8 pm.
The event will feature 10 bands rocking all afternoon, and will also feature raffles with a wide-variety of prizes to be won.
“I’m honoured, and humbled, and so thankful,” Harrison said, noting that the event was sold out more than a week-and-a-half before the show date. “The generosity from people is just amazing and heartwarming, and I can’t say enough about it.”
Although sold out, donations in support of Alex and his family will be accepted at the Legion during the June 2 event.
Tonya Harrison can also be contacted at tanyaharrison74@gmail.com.