Betty-Joe MacDonald

Fundraiser held for transverse myelitis patient on his 15th birthday

 

By Jonathan Martin

 

A local youth celebrated his 15th birthday in a big way this past Sunday.

A fundraising dinner, complete with live entertainment and door prizes, was held at the AMA Sportsmen’s Club both in celebration of his birthday – he turned 15 on the 15th –  and as a way to cover some of the costs associated with his treatment.

Phoenix MacDonald-Gagnon is fighting against transverse myelitis, a type of spinal cord inflammation that prevents signals from passing through the spinal cord into the rest of the body.

For now, MacDonald-Gagnon is restricted to a wheelchair, but he’s been making steady progress since his diagnosis last year, according to his aunt, Kari Dufour.  She said that for now, the family is dealing with each challenge as it comes.  One of those challenges is accessibility.

Phoenix and his mother, Betty-Joe MacDonald, spend their weekdays at Holland Bloorview Kids’ Rehabilitation Hospital in Toronto.  On the weekends, they come back South to stay with Misti and Wayne Moyer.  The house in which they’re staying is not designed with wheelchair-accessibility in mind, according to MacDonald, so the next big project will be renovating the residence.

Phoenix MacDonald-Gagnon celebrated his 15th birthday last Sunday with a fundraiser in his honour at the AMA Sportsmen Association.

MacDonald said she hasn’t been given an official figure yet, but she estimates the price tag for construction will sit somewhere between $15,000 and $20,000.

“It’s not easy,” she said.  “We have good healthcare, but there are a lot of things that aren’t covered.”

Dufour said they applied to receive funding from the March of Dimes Canada, the Rehabilitation Foundation for Disabled Persons, but were denied.  She said for now it looks like the family will be paying out-of-pocket.

Still, the MacDonald’s are remaining in high spirits, especially on Phoenix’s special day.

“It’s really special to see all these supporters,” he said.

“He’s amazing,” said Dufour.  “He went in to see the head neurologist in the London hospital, and (the neurologist) used words like ‘incredible.’  He couldn’t believe how far Phoenix has come in such a short amount of time.”

Betty-Joe said that Phoenix has some movement in his arms, which she said is something the doctors told her Phoenix would be unlikely to achieve.

“We’re hopeful that one day he’ll have enough strength to walk again,” she said.  “For now, hope is definitely the key.”

Second fundraiser planned for teen with spinal cord ailment

 

By Ron Giofu

Although Phoenix MacDonald-Gagnon is making progress, the local youth and his family still need help.

A fundraiser is planned for the AMA Sportsmen Club this Sunday, which is also Phoenix’s 15th birthday. He was stricken with Transverse Myelitis, an inflammation of the spinal cord, in September 2017 and has been battling the ailment ever since. His journey has included extended hospital stays in London and Toronto but the latest fundraiser will help accommodate his needs at home.

A fundraiser was held in March at the Columbian Club Hall in McGregor for Phoenix MacDonald-Gagnon and Betty-Joe MacDonald being able to attend. A second fundraiser is planned for July 15 at the AMA Sportsmen Association.

According to Phoenix’s aunt Kari Dufour, the proceeds from the July 15 fundraiser will go towards upgrades at the home he stays at when he returns home on weekends. Phoenix and his mother Betty-Joe stay at the Holland Bloorview Kids Rehabilitation Hospital in Toronto during the week where Phoenix undergoes physical therapy.

On weekends, they return home and stay at the home of Misti and Wayne Moyer.

“We have noticed that more renovations on the house are needed to help make this Phoenix’s forever home. We are also holding this fundraiser to help raise funds for daily medical supplies that are not covered and we are also trying to get Phoenix an assisted standing device for ongoing at home therapy,” Dufour states in a flyer she is circulating.

The family is uncertain to what extent Phoenix will recover, stating doctors are “unsure” if he will have full use of his arms or be able to walk again. He utilizes a wheelchair to get around.

The fundraiser will be from 3-6 p.m.

Tickets are $20 with children 10-and-under being $10. For tickets, please call Dufour at 519-819-9723 or Misti MacDonald-Moyer at 519-965-1514.

A fundraiser held for the family in McGregor in March topped $17,000, with those proceeds earmarked for an accessible home, the wheelchair, medications and 24/7 assistance.

Massive crowd turns out to support Phoenix MacDonald-Gagnon and family

 

 

By Ron Giofu

 

Approximately 425 people jammed the Columbian Club Hall in McGregor Sunday evening to support Phoenix MacDonald-Gagnon and his family.

The surprise of the night was the arrival of Phoenix himself, along with his mother Betty-Joe. Phoenix who was originally hospitalized last September in London before being moved to Toronto in December, made his first visit back to Essex County for the fundraiser.

Both Phoenix and Betty-Joe’s return to the area was short-lived, as they had to be back at the Bloorfield Rehabilitation Centre in Toronto later Sunday night. Phoenix went to bed the night of Sept. 26, 2017 and woke up shortly thereafter unable to move. While doctors thought he may have suffered a pair of strokes, he is currently being treated for Transverse Myelitis, an inflammation of the spinal cord.

Phoenix, a 14-year-old Grade 9 student at Western Secondary School, said planning for his attendance at the fundraiser began a couple of weeks ago.

A fundraiser was held Sunday at the Columbian Club Hall in McGregor for Phoenix MacDonald-Gagnon and Betty-Joe MacDonald being able to attend. The event raised
approximately $17,000.

“I’m very happy,” he said, regarding being able to attend. “It’s unbelievable to see my friends and family.”

Many in attendance, including members of the family, wore “Team Phoenix” T-shirts. A video was shown on the big screens in the hall showing Phoenix’s progress as he has gone from limited to no movement to the ability to move some of his extremities.

The experience has been “a crazy roller coaster ride,” he said.

Phoenix still is unable to walk and moves via a wheelchair. Early estimates on his permanent return home are June but he will still need an accessible vehicle and home along with other expenses associated with his treatments.

As of Monday morning, the fundraiser topped $17,000.

Betty-Joe said they are still not sure what the final outcome will be. She thanked the community for its outpouring of support.

“It’s very overwhelming. Amazing, actually,” said Betty-Joe. “This is what it means to be from a small town.”

Calling herself a “pretty positive” person, Betty-Joe said it has been a miracle to watch Phoenix progress as he has.

“We just want to say thank you to everyone,” she said.

A packed house at the Columbian Community Hall in McGregor helped support Phoenix MacDonald-Gagnon and his family Sunday evening. The event raised $17,000.

The Columbian Squires in McGregor made a $2,000 donation to the Bloorfield Rehabilitation Centre’s foundation as part of the fundraiser. The money will help fund the family’s expenses while there.

Larry Bezaire, one of the organizers of the fundraiser, said they were originally planning for 200 or so to turn out.

“We got 400,” he said, fighting back emotion. “I want to thank everyone.”

Due to the amount of donations they received, the pasta dinner was presented with very little expenses as even much of the food was donated.

There is also an online fundraising campaign, as a GoFundMe campaign has been started. To contribute, visit www.gofundme.com and search “Help Phoenix with Medical Expenses.” The direct link is https://www.gofundme.com/kbfbv6-help-phoenix-with-medical-expenses.

Fundraiser being held for teen hospitalized with an inflammation of the spinal cord

 

 

By Ron Giofu

 

A fundraiser is being held March 4 in McGregor to help a Western Secondary School student who is being treated for an inflamed spinal cord.

Phoenix MacDonald-Gagnon, 14, went to bed the night of Sept. 26, 2017 with a feeling of pins and needles in his arms and legs. His aunt Kari Dufour said that was attributed to him possibly sleeping wrong but when his mother Betty-Joe MacDonald went to check on him around midnight, Phoenix had no feeling from the neck down.

Dufour said Phoenix was transported to Windsor Regional Hospital’s Metropolitan Campus but was soon airlifted from there to London’s Children’s Hospital. Doctors there suspected he had suffered two strokes but are now treating him for Transverse Myelitis, an inflammation of the spinal cord.

The teen spent time in a medically-induced state and breathed through a trach tube but now is able to breathe on his own. He is now at the Bloorfield Rehabilitation Centre in Toronto, where has been recuperating since Dec. 5.

Phoenix now has some movement in his extremities and can do such things as help cook and communicate via social media. The Grade 9 student is able to work towards getting school work done as well.

“He’s working on getting some credits while up there as well,” said Dufour.

Betty-Joe MacDonald and her son Phoenix MacDonald-Gagnon will be the subject of a March 4 fundraiser in McGregor. (Submitted photo)

Dufour indicated that it is still unclear as to whether Phoenix will walk again but is making constant progress so far. He will remain in Toronto until his progress plateaus but the family has a target date of the end of June to bring him home.

“As long as he is making gains, they will keep him there,” said Dufour.

Phoenix’s spirit has helped get him through a lot of what he has gone through so far, Dufour stated, but acknowledges there is a lot more work to do.

“He’s worked very hard to get to this state,” said Dufour. “He’s got a long road ahead of him but he’s got an amazing outlook on life. I think that has helped him get to where he is today.”

In an update posted to her Facebook account Saturday morning, Betty-Joe stated that it was their 21st weekend away from home.

“Phoenix is still making huge gains. It’s awesome to see what he can do different everyday. He’s still working on his goal of sitting up on his own. His core is getting stronger everyday,” Betty-Joe stated as part of her update. “Phoenix was lowered onto the side of the therapy bed an was able to hold him self up in the sitting position for a few minutes. He has the strength now to hold him self in the position when we try to ‘push’ him over. He is able to lower himself onto his forearm and push himself back into the sitting position. It’s hard to explain in detail the things Phoenix can do everyday it’s something new. “

Betty-Joe added that “Phoenix has to learn how to control every muscle in his body over again. It’s these things we take for granted because it happens naturally for us. He’s been getting muscle stimulation everyday now on his left bicep, this is an attempt to try to get his left arm moving in the upward motion. So maybe one day he will be able to feed himself, give himself a drink, brush his hair or teeth or even just to scratch an itch on his face. Everything takes time and patience and Phoenix has the determination to succeed at obtaining these goals.”

Phoenix MacDonald-Gagnon is still able to communicate via social media despite his ongoing recovery from Transverse Myelitis, an inflammation of the spinal cord. (Submitted photo)

Phoenix starts Wednesday in the therapeutic pool Betty-Joe added, though acknowledges “he’s not looking forward to it but understands that this may be another way of strengthening his muscles. We are using every recourse available to help Phoenix any way possible.”

The family, including Phoenix’s older brother Raven, is currently residing in a small apartment in Kingsville but Dufour said they hope to move back to Amherstburg where the bulk of the family resides. Betty-Joe had to quit her job to help support Phoenix and the family will need an accessible home upon their return.

“They are in need of some help,” said Dufour. “Betty-Joe is a single mom with two boys.”

Other items Phoenix will need include a wheelchair, medications and 24/7 assistance. They will also have to cover costs to get him back and forth to therapy sessions.

“We’re trying to make the fundraiser as big as we can,” Dufour said.

For more information or to purchase $20 tickets for the pasta fundraiser at the McGregor Columbian Club Hall (formerly the McGregor K of C), call Dufour at 519-819-9173 or e-mail her at karidufour@hotmail.com. People can also call Misti Moyer at 519-965-1514 or Larry and Laura Lee Bezaire at 519-736-5267.

The fundraiser runs from 4-7 p.m.

There is also an online fundraising campaign, as a GoFundMe campaign has been started. To contribute, visit www.gofundme.com and search “Help Phoenix with Medical Expenses.” The direct link is https://www.gofundme.com/kbfbv6-help-phoenix-with-medical-expenses.