A grassroots group of parents whose children have been diagnosed with cancer have used their experience to fuel their volunteer work as they help support other families going through the same.
The group is called Candlelighters Simcoe, a non-profit organization of parents of children with cancer who are dedicated to being a light during dark days for other parents who receive the life-changing news.
With volunteers living in areas across Simcoe County, help is always close by.
“Support is offered to families from the day of diagnosis to as long as families require it,” said Cheryl Gotthelf, the parent liaison with Candlelighters Simcoe.
The organization’s volunteers and programs endeavour to address the complex challenges associated with a child cancer diagnosis and ease the burden on children and their families.
Parents receives a care package full of gift cards for food outlets, gas cards, parking passes for the Hospital for Sick Children in Toronto, and resources. They can also take part in programs including a monthly parent support group, an emergency financial fund, tutoring for children, and art therapy (restarting in January).
In addition to the stress of having a child with life-threatening cancer, the diagnosis and treatment creates a huge economic impact on the family, said Gotthelf.
“They say it costs about $30,000 out of pocket on average for a childhood cancer,” she said.
Gotthelf connected with Candlelighters Simcoe soon after her daughter, Kristen, was diagnosed with leukemia in 2004 at the age of one. The registered practical nurse had to leave her job to be home with her daughter.
Through Candlelighters Simcoe, Kristen took part in the art therapy program and the teen program, and has started volunteering, too.
Gotthelf is dedicated to helping other families through her volunteer work.
“For me, the driving force has always been realizing the number of gaps there is in the system and just wanting to make things better for the next parent who hears, ‘Your child has cancer.’ It changes everything,” she said.
There are more than 50 families in active treatment with the organization across Simcoe County, including some in Collingwood.
"All the volunteers have kids who had cancer and they understand what the families are going through. It helps to talk to people that have been there,” said Gotthelf.
“My daughter is 15 years off treatment and she’s in university. People can realize that there is an end to it. It’s that hope and the sense of not being alone that’s important for people to hear.”
Candlelighters Simcoe was founded in 1990 by Barb Johnson, whose son is a two-time cancer survivor. Johnson, a pediatric occupational therapist, was asked to start a group by another parent of a child with cancer because there was no support available in the region.
It was later incorporated as a charity.
September is Childhood Cancer Awareness Month. Government of Canada statistics state 880 children younger than 15 are diagnosed with cancer each year. Incidence of childhood cancer has remained relatively stable since 1992 (153 cases per one million), but mortality has decreased over time due to improvements in cancer treatment.
About 150 children die from cancer in Canada each year.
Candlelighters Simcoe held a fundraising walk, the Super Hero Stomp, along the Barrie lakefront on Sept. 21. About 100 supporters walked and raised funds for the organization. They raised $13,000. Last year, $12,000 was raised. Candlelighters Simcoe has no overhead, so 100 per cent of the funds go to programs.
Donations can be made at candlelighterssimcoe.ca.
