Shining a gold light on childhood cancer

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September is childhood cancer awareness month and the flag of the charity organization Northern Ontario Families of Children with Cancer (NOFCC) will be flying at Town Hall to help raise awareness for a disease that seven children in Ontario are diagnosed with every day.

Family and friends of children affected by childhood cancers gathered at Town Hall Square to help raise awareness

A small crowd of families and friends of local children diagnosed with cancer gathered at Town Hall Square for the flag-raising presentation. Gold ribbons – the internationally recognized colour representing the fight against childhood cancer – were available for attendees to wear to help increase awareness.

Dayna Caruso, Executive Director of NOFCC, relayed that they help seven families in north Muskoka affected by childhood cancer. Several of them had not been receiving NOFCC support due to a miscommunication that Huntsville wasn’t part of northern Ontario and therefore didn’t fall under the organization’s umbrella.

“Families who have children with cancer can lose a third of their income or more due to out-of-pocket treatment-related expenses,” she said. “For parents without private insurance, that amount could be $5000 per month. And as costs increase, income decreases because both parents are unable to work. People don’t realize the impact. Families get split up. They are away from home but still need to maintain that home.” NOFCC is the only organization that offers families this type of financial support in northern Ontario.

Childhood cancer is a disease that no one likes to talk about or think about. But change starts with awareness, asserted Caruso. “Lots of childhood cancer information is sugar-coated and made to look like a walk in the park. It’s not rare as some believe.” The Canadian Cancer Society reports that total new cases of childhood cancer (kids under 15) in Canada has remained stable at about 900 cases per year since 1985, representing about one per cent of total cancer cases.

Mayor Scott Aitchison and Dayna Caruso, Executive Director of NOFCC

“There are still many types of cancer for which there are few or no effective treatments. New discoveries in this field are lagging way behind adult treatments and very few compounds are designed specifically for children. Ninety per cent of children are on experimental trials. And much of the current research funding is coming from non-profit organizations,” said Caruso. The Canadian Cancer Society reports that it is the largest charitable funder of childhood cancer in Canada. Over the past five years, they have funded $17.4 million in childhood cancer research — just under 10 per cent of their research investments. For the coming year, they have committed $4.5 million to support 47 research grants and awards. They also state that about 90 per cent of children with cancer are enrolled in clinical trials; in 2014, the Canadian Cancer Society invested $5.4 million in clinical trials.

The goal of the NOFCC campaign is to show families that support is available. “We want to raise the profile of the gold ribbon so that it’s as recognizable as the pink ribbon,” said Caruso.

Mayor Scott Aitchison promised to help with that effort. “This is a small community and a uniquely engaged and caring community,” he said. “We rally around each other. We will fly this flag and maybe make Tom Thomson gold for the month.” He said he would speak to the issue of childhood cancers at the next council meeting to help raise awareness.

At the end of the presentation, Caruso awarded a $1000 Vale Shine Bright Bursary to Angie and Barry Smith for their daughter Andrea’s post-secondary education. Andrea’s sister Sarah died at the end of February from B-cell Lymphoblastic Lymphoma.

The Vale Shine Bright Bursary was awarded to Andrea Smith whose sister Sarah died in February. Her parents, Angie and Barry, accepted on her behalf.

Angel Dawson’s family was one of those initially missed for NOFCC financial support. Her daughter Melody, 8, has undergone treatments – including chemotherapy – for three conditions: hystiocytosis (which is in remission), diabetes insipidus (which is under control), and neurodegenerative disease since being diagnosed in October 2012. They received back payment from the NOFCC to help with the support they initially missed. “They’ve been amazing, life-saving,” said Dawson. Melody is home now and going to school but her treatments are ongoing – currently in the form of three pills taken twice per day – and the family makes trips to Orillia as needed.

Leanne Webster’s son Nathan Sharpe was first diagnosed with leukemia at age six, requiring travel to Sick Kids Hospital in Toronto for twice-weekly treatments. “(NOFCC) supported us while we were at Ronald McDonald House and helped us to pay our bills. They are completely non-profit and rely on donations to help the families of kids who have cancer,” she said. “They are an important charity for our northern families and for recognizing our children’s fight.”

To learn more about NOFCC, childhood cancers, and the support available for families, visit www.nofcc.ca.