The family of a young Sault Ste. Marie boy who died of a rare and aggressive form of brain cancer is one step closer to getting the federal government to proclaim a national day of awareness for the disease.

Kayge Fowler was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) when he was just five years old. He fought for over a year, but lost the battle on May 31, 2019 while receiving treatment in Toronto.

The Fowler family has made it their goal to raise awareness about the disease and submitted a petition in the House of Commons to declare May 25 National DIPG Awareness Day across Canada. May 25 is the day Kayge was diagnosed with DIPG in 2018.  

His family says a national day of awareness would help educate people about the prevalence and severity of the disease, encourage more funding and research, provide support for families who have children battling DIPG, and honour the victims.

Late last week, Mandy Fowler, Kayge’s mother, announced on Facebook that they got 8,712 signatures from people across Canada and from other countries.

In her post, Mandy said she has received an email confirming that their cause has been certified to be presented in front of the House of Commons by Sault Ste. Marie MP Terry Sheehan.

“Let’s keep praying we did enough! If we didn’t, don’t worry, we will try again and again until we get the job done.” said Mandy on Facebook.

CTV News reached out to Sheehan and he had this to say about the importance of having a national DIPG awareness day:

"DIPG is the most fatal childhood cancer with a 100% fatality rate.   As such, we need to immensely increase its awareness by educating Canadians about this disease, increase opportunities for study and discussions amongst health care providers, and to encourage funding for ongoing research."

Sheehan also says the number of signatures for Mandy's petition is substantial and is by far the highest amount received on a petition he has ever been involved with.  He says it is a remarkable achievement.

Kayge's grandfather, Gerry, told Sheehan about his grandson's diagnosis earlier this year.

The MP rose in the House of Commons before Monday's Question Period to make a statement about Kayge and his family. He will present the Fowler's petition later in the day.