One family's fight to bring awareness to a rare childhood cancer
Published Friday, August 23, 2019 12:01PM EDT
Last Updated Friday, August 23, 2019 12:02PM EDT
A well-known family in Sault Ste. Marie is pushing to have a national day of awareness for a rare form of childhood brain cancer.
A petition presented in Ottawa earlier this summer was denied, but family members say they won't give up.
Mandy and Paul Fowler lost their six-year-old son, Kayge, in June to Diffuse Intrinsic Pontine Glioma (DIPG).
This disease is incurable and affects 30 children in Canada each year, so the Fowler family wants to raise awareness.
"Basically more awareness equals more research, more funding, and hopefully other families won't have to go through what we're going through," said Mandy.
"It's something no child should never have to go through. Everyone should have a chance and right now with DIPG, there is no chance," said Paul.
Kayge's mother started a petition asking the House of Commons to declare May 25 a national day of awareness for DIPG and got almost 9,000 signatures.
She says the support from the community is overwhelming.
"They helped keep our son alive for as long as they did. And we get to move forward knowing that it was never money that stopped him from receiving the treatments he needed," said Mandy.
Sault Ste. Marie MP Terry Sheehan presented the petition to the House of Commons in June, but it was recently denied, as there is already a brain cancer awareness day in October.
"We have raised awareness significantly about DIPG, which is a win, but I think that we can probably do a little more with different levers available as parliamentarians when parliament resumes once again," said Sheehan.
The Fowlers are not deterred by the rejection.
"It's going to be a life-long fight for all of us. Our other kids already talk about taking the torch when we're gone and continuing on with the foundation if they need to. Hopefully we have a cure by then," said Paul.
The Fowlers add that they will continue raising money for the Kayge Fighters Against DIPG Foundation to help find a cure and provide support for other families dealing with this.