A Greater Victoria family is turning the grief of losing their three-year-old son into a way to help others.
Cari Comboye and her sister, Lindsay Walper, hope to set up a non-profit organization to pay tribute to Comboye’s son Liam, who passed away in October from a rare form of brain cancer called diffuse intrinsic pontine glioma (DIPG), which is terminal upon diagnosis.
“We were robbed of his beautiful life. We just want to make him proud,” said Walper, a Saanich resident, who needs a bit of help from the public to get the organization off the ground.
“My sister and her husband, they’ve lived through watching their child die from cancer … It’s almost part of the healing process for us in the sense that it’s keeping him alive. We can’t physically touch him, see him, listen to him giggle, hear him call our names. This way he will never be forgotten and he’s going to change the lives of families who have received this diagnosis.”
The duo is currently in the process of setting up a local chapter of the non-profit organization called the Cure Starts Now – the first in Canada. The foundation was originally started in 2007 in the United States by Keith and Brooke Desserich, who lost their six-year-old daughter to the disease. Its focus is on raising awareness of and fundraising for research for pediatric brain cancer, specifically DIPG.
Comboye’s nightmare began last April when Liam was diagnosed with DIPG, a rare and aggressive form of pediatric brain cancer that impacts the brain stem. The next day Liam was flown to B.C. Children’s Hospital to receive treatment, where he was immediately scheduled for 30 radiation treatments on his brain, followed by several rounds of chemotherapy.
But the treatment was not a cure and would only delay the inevitable for a few months. Watching Liam be put on anaesthetic every morning and having to hold her little boy in her arms while he screamed was heartbreaking for Comboye.
“They had to put the radiation mask on and hold him to the table and we had to walk out while he was being treated knowing this isn’t going to cure him, it’s just going to buy us time,” Comboye said.
In September an MRI showed the progression of the cancer, but Comboye refused to put Liam through the torture of re-radiation again.
In the final weeks of his young life, Liam’s vital organs began to shut down. He could no longer play with his fidget spinner because his right hand was paralyzed and he lost mobility in his legs so he could no longer run around with his younger brother.
Liam passed away on Oct. 19, 2017.
Now, his family wants to keep his legacy alive. They want Liam to be remembered as a fun-loving, smart and kind-hearted soul. But Comboye and Walper need a bit of help setting up the local chapter of the Cure Starts Now. They need a lawyer or someone with experience setting up non-profits who can help them fill out the proper paperwork to stay within the laws of Canada.
Once it’s up and running, Comboye and Walper hope to raise awareness of the disease through events such as walks and auctions, and raise money for research, since treatments haven’t changed in the last 50 years.
“More people need to be aware of what this disease is and we need more help researching this,” Walper said. “He was beautiful.”
For more information or to help email firstname.lastname@example.org.