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Parents of 4-year-old girl who died from rare brain cancer call for more awareness

TORONTO — Last December, just months after her fourth birthday, Isabelle Borkowski died after battling diffuse intrinsic pontine glioma (DIPG), a rare form of terminal brain cancer. Now, Isabelle’s parents are working to raise more awareness about DIPG while honouring their daughter’s memory.

“We’re hoping that bringing awareness to this disease will help eventually stimulate people in the government to provide additional funding for research,” said Isabelle’s father, Michal Borkowski, in an interview with CTV’s Your Morning from Toronto.

The Borkowskis are circulating a House of Commons petition sponsored by Liberal MP Julie Dabrusin, calling on Parliament to declare May 17 as a national day for DIPG awareness.

“Very often, doctors don’t know much about (DIPG). In smaller communities, smaller towns than Toronto, it often gets misdiagnosed initially because the symptoms can vary so much,” said Michal.

DIPG is a rare brain tumour that affect the base of the brain and has no known cure. Isabelle’s parents say kids diagnosed with DIPG have an average of nine months to survive and can be expected to die anywhere between a week to a over two years.

“The worst thing about this disease for families like us, is that when you find out your child is sick, they tell you there is no hope. It will require a miracle for your child to survive it,” said Michal.

On Monday evening, the CN Tower will light up in gold and grey with sparkles for DIPG in honour of Isabelle’s memory. Go up to the top of the CN Tower was something Isabelle always wanted to do. Despite the fact the tower was closed to the public due to COVID-19, staff at CN Tower arranged a visit for her in November, before she passed.

“She made such an impression on them that they reached out to us in January and they offered to do something. And one of those things lighting up for DIPG in gold and grey on May 17,” said Michal.

On a smaller scale, the Borkowskis are also remembering Isabelle and raising awareness for DIPG through the Kindness Rocks project, a trend started by a woman from Cape Cod, Mass. in 2015 that encourages people to paint rocks and pebbles with art and inspirational messages and scattering them around for others to find. The rock-painting project also gained momentum in the DIPG community after Isla Taney, a British girl with DIPG, started the #islastones campaign before she died at the age of seven.

“When I saw (the rocks), I just thought of Isabel, and so that kind of inspired us to get involved with the Kindness Rocks project,” said Jackie Borkowski, Isabelle’s mother, in an interview with CTV’s Your Morning from Toronto.

The rocks also have ‘Remembering Isabel’ printed on them, as well a hashtag so people can learn more about DIPG.

“We distribute them around the neighborhood and the hope is that anyone who finds them has a moment of happiness or joy, and that they move that rock around and maybe somebody else will find it.”

The Borkowskis say they’re taking it one day at a time as they remember their daughter.

“We remember her every single day we talked about her every single day. We even sometimes talk like her. But you know it’s been a very difficult few months and we were just trying our best,” Michal said. 

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