VICTORIA -- A grassroots organization on Vancouver Island is helping families who have children with cancer navigate the difficult circumstance.

One week before Christmas in 2005, the Kerr family received news that would change their lives forever.

"At the age of five Jacob was diagnosed with Neuroblastoma," said Susan Kerr, Jacob’s mother and executive director of the Island Kids Cancer Association. "It‘s a solid tumour and was stemming out of his adrenal glands, in his belly."

Jacob was rushed to BC Children’s Hospital in Vancouver.

"We ended up having a very intense year of chemotherapy, radiation, stem cell transplant and multiple surgeries," said Kerr.

Following a year that included 40 round trips to the mainland, a drastically reduced family income and an increase in additional expenses, Susan began advocating for island families in similar circumstances.

"On top of that, there’s the mental health stresses of supporting a child with a critical illness, not knowing what the future holds and just going day by day, really."

In 2016 she founded the grassroots organization, Island Kids Cancer Association. In 2017 it received charitable status.

"We support children, youth and their families as they go through cancer treatment and post-treatment," said Kerr. "We also support families that are going through palliative treatment and bereavement with the loss of a child."

Many of the board members and staff know firsthand what services families need, while navigating their way through their cancer journey.

Tania Downey is a family navigator for Island Kids Cancer Association and has personal experience with a child getting diagnosed with cancer.

"My son was 18 when he passed away," said Downey. "Although I got 18 years with him, I believe that in my heart, I felt like a lived a lifetime with him."

In 2012 her son Zack Downey was diagnosed with non-Hodgkin’s lymphoma. After a brave fight, he lost his battle to the disease in May of 2014.

"You have to walk that path to understand how difficult it is,' said Downey. "It’s not necessarily when you’re going through it that you need the help, it’s more about when it’s all over and everybody thinks that everything is ok."

"For an oncology family it doesn’t stop there, it continues," she said.

In 2017, Jacob Kerr’s cancer had returned. This time it was cancer in his pelvic bone. Two years later it metastasized in his jaw. Jacob lost his battle with cancer in March of 2019.

"If what we have gone through as a family can help another family, I mean, this [the Island Kids Cancer Association] all started because of Jacob, really. I think that this all can’t be for nothing and obviously it’s not going to be," said Kerr. "If we could help one or two other families based on our journey.... then I’m happy."

To find out more about Island Kids Cancer Association or to find out how you can donate you can go to their website here.