A national ePetition has been launched to raise awareness of Diffuse Intrinsic Pontine Glioma (DIPG), a terminal and malignant brain tumour found in children.
It’s incurable and inoperable, with a zero per cent survival rate. The city lit up the Centennial Park stage in gold Monday night in a show of support.
Locally, one family is sharing their story, making the most of tragic situation after Adaura Cayford, 9, died last July 1 after her battle with DIPG.
“It’s really between them passing in your arms or passing in the hospital,” said Isabelle Cayford, Adaura’s mother, noting DIPG is difficult to study because parents are faced with making the most of the time left.
The petition declares May 17 as National DIPG Awareness Day. It was created by Jacqueline and Michal Borkowski, parents of four-year-old Isabelle Borkowski who also died from DIPG last December.
Cayford says the timing was right to get involved and spread awareness of the disease.
“The community is strongly behind us, we haven’t been forgotten,” she said. “The community has been very gentle and on our side. What we want to do is get involved, we believe that if we put more awareness to this horrible disease, there could more government funding for DIPG research.”
She added that tissue samples were given by Adaura to help with research efforts.
Fort St. John Mayor Lori Ackerman says more awareness is needed for serious childhood illnesses.
“While the prognosis for a child diagnosed with DIPG is not good, what bothers me is it’s the same prognosis that would’ve been received 40 years ago and that is just wrong,” wrote Ackerman. “We have world-class researchers in our province and in our nation and we need to encourage them to do some research on this.”
MP Bob Zimmer was approached by the Cayford family and says he’s also keen to bring attention to the cause.
“I was at the memorial service for their daughter, way too young of an age," he said. "Anything we can do for the cause and get support in the medical field for this, I’m happy to do."
Families across the country are working together to contact all 338 MPs and collect as many signatures as possible before the petition closes on September 10, 2021.
Campaign Page: https://www.facebook.com/DIPGAwarenessDayCanada
May 17 Event Page: https://www.facebook.com/events/1049346405592044
ePetition: https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-3426
Tom Summer, Alaska Highway News, Local Journalism Initiative. Email tsummer@ahnfsj.ca
