A heart rending story about a Sault couple and their seriously ill son has prompted community members to do everything they can to come to their aid.
Paul and Mandy Fowler’s five year old son Kayge was flown to Toronto’s Hospital for Sick Children May 25, where the couple was told Kayge has an inoperable brain tumour around his brain stem.
The couple is currently by Kayge’s side while staying at Ronald McDonald House in Toronto.
Paul, in a telephone interview with SooToday Wednesday, said “our whole world is upside down. It feels like our hearts are getting ripped out of our chests.”
“A whole team of paediatric oncologists was assembled to meet with us. They told us our son has DIPG which is, in their words, ‘the most aggressive kind of cancer you can get, that there is no cure and there is no hope.’"
“But, we can’t accept that,” Paul said.
“We’ve been researching and found some options for different experimental treatments and drugs, clinical trials, and some of them seem like they might hold some hope.”
“We’re just trying to find the best option for him, to extend his life or to give him the best quality of life for however long he has left,” Paul said.
None of the experimental treatments are available in Canada.
“They’re very expensive. Most kids with this disease seem to last a year, some have been around for over two. Our hope is to buy enough time and wait for a miracle.”
Currently, Kayge is receiving palliative radiation to minimize his symptoms, Paul said.
“He’s not doing well. He’s lost mobility on his left side of his body and quite a bit of strength on his right side as well. He can’t stand or walk or even sit on his own.”
“We’re very hopeful the radiation will help him for a while so that we can explore some of the other options, but we really need some help to be able to go forward with the treatments that he needs.”
Relatives here in the Sault are taking care of Paul and Mandy’s four other children.
Mandy had to quit a new job and Paul has received leave from his employer, the couple wanting to renovate their home.
“We need a major house renovation...we’re scrambling, looking for donations to help finish our house. We want to bring Kayge to a home that’s safe and appropriate and comfortable for him,” Paul said.
“We might also have to sell it to pay for some treatments. Either way the house has to get done. Hopefully we can raise enough money to get started on these clinical trials in the next few months,” Paul said, adding the most promising treatment for Kayge appears to be in Mexico.
“We’re not giving up. We believe in miracles, so we’re praying for a miracle. We can’t give up. When a child needs you, you’re there, no matter how weak you feel. You’re strong for them, you show them no fear and you take private moments when you need to. But you show them no fear and you fight. We’re not giving up on him.”
On May 6, Mandy took Kayge to Sault Area Hospital’s emergency department, concerned because his face started drooping.
Physicians diagnosed Kayge as suffering from Bell’s Palsy, but his condition worsened.
Kayge was no longer able to blink, suffered vision loss and began losing mobility, unable to stand or move his left leg.
Mandy and Paul returned to SAH’s emergency department, and an MRI showed Kayge had a brain tumor. The large tumor was pushing into his eye as well as parts of his brain that affect the nerves in his face.
Sent to the Hospital for Sick Children, Mandy and Paul were told by physicians they believed the tumour is cancerous and Kayge began receiving radiation treatment.
The Fowlers also need money for food, gasoline and other essentials while Mandy and Paul are in Toronto staying at Kayge’s side.
A Superhero Bash fundraiser for Kayge (who loves superheros) and his family will be held at the Marconi Club July 12.
Tickets will be available next week or by email money transfer to [email protected]
Superhero costumes are optional but there will be a cash prize for the best one, organizers say.
Tickets are $35 and include dinner, with live entertainment provided.
Doors will open at 6 p.m. with cocktail hour, dinner will be served at 7 p.m.
Tickets will be available next week at the Midwives of Algoma at 765 Queen Street East and other local locations to be announced.
Concerned friends have also started a GoFundMe page to help pay for the many expenses the Fowlers face at this difficult time.
$100,000 is the goal, with over $21,000 raised as of Wednesday.
More Information can be found on the Prayers for Kayge/Kayge Our Superhero Facebook page.
“If anyone’s able to help...the support from everybody in the Sault so far has been amazing. It really helps knowing we have the community behind us, but we’re going to need a lot more help,” Paul said.
“Time is precious.”