KELOWNA — A celebration of life and an effort to raise awareness about a rare brain tumour was held in Kelowna this weekend. The tumour is one that took the life of a 7-year-old Kelowna girl.
The cancer is called Diffuse Intrinsic Pontine Glioma (DIPG). If you’ve never heard of it, you’re among the majority, and that’s what the young girl, Sevanah Simmons’ family is hoping to change.
“We had never heard about DIPG until her diagnosis… Slowly their body shuts down but they stay completely cognizant, so it’s like torture for these children. It’s awful,” says Sevanah’s mother, Angelina Simmons.
Angelina’s daughter loved monkeys, hence the theme for Sunday’s Monkey Crew Against DIPG Family Fun Day at Mission Creek Park.
“Anyone that knew Sevanah knows that she had a gigantic monkey collection and she adored monkeys,” says Angelina.
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About 100 people came out to the event which featured a bounce house, food, games and face painting.
Money was raised for research and awareness initiatives as well.
“We had DIPG awareness day declared for May 15 in B.C. and we have our sights set on a national date so we’ll be putting out a petition to the House of Commons to get a national date,” says Angelina.
Angelina says DIPG has a zero per cent survival rate.
“Our girl desperately needed a cure and we just don’t want any other families to have to go through this,” says Angelina.
“She passed away September 4, 2015, so she was only with us for five months and three days after diagnosis. It takes them very quickly.”
Money raised at the event will go to the Dr. Cynthia Hawkins Hospital for Sick Children (SickKids) in Toronto.