Every year in Alberta, about 190 children are diagnosed with cancer and are thrust into stormy waters, where they will feel alone and frightened. At Kids Cancer Care, we strive to ease the pain and suffering of these children every day, whether that means rekindling lost childhoods at Camp Kindle, restoring confidence and hope through education support and scholarships or permanently eliminating the disease through new research and better treatments. We believe it is possible to change the course of childhood cancer in our lifetime, but we need your help to chart the way.
Days before her surgery, Sofia was jumping on the trampoline and performing summersaults in gymnastics class. While that carefree little girl is gone forever, Kids Cancer Care and her fierce determination are helping her to rebuild a life after cancer.
Sofia was four when she was diagnosed with a group three metastatic medulloblastoma, a highly aggressive pediatric brain cancer. Following an emergency surgery to remove the primary tumour, Sofia’s parents Shelly Bhayana and Naushad Hirani faced life-altering decisions about their daughter’s treatment. At the same time, they were helping Sofia to rehabilitate and relearn to move again.
But the very treatments that saved her life forever changed her life. Sofia suffers from treatment-related brain injury, which has caused mobility, speech, hearing and neurocognitive deficits. With months of intense physiotherapy, occupational therapy and speech therapy, up to three hours a day, Sofia has regained the ability to feed herself and walk with a walker. She wears hearing aids to hear and has learned to talk and write again. She is also learning to dress herself again.
“Sofia works so hard to do the basic things that we take for granted,” says Shelly.
Despite her struggles, Sofia rarely complains. Little things bother her like why she can’t run or pull on her socks by herself the way her brother and sister can.
As with most children with cancer, survival has come at an enormous cost for Sofia. Roughly 75 per cent of survivors live with at least one chronic health problem and a third of these conditions are severe or life threatening. With an estimated 30,000 survivors living in Canada today, the late effects of children’s cancer treatments are exacting an enormous cost on the survivor, the family and the health care system.
Naushad and Shelly know firsthand the magnitude of these costs.
“Sofia will never be fully independent,” says Shelly. “And I worry. What if something happens to us? Who will look after her? How will this impact Shaan and Sonya? What about their childhood?”
Sofia’s younger sister Sonya already sees the enormity of their family’s struggle. “DiDi’s older than me, but I’m kind of like the big sister, aren’t I?” she says. “What did the doctors do to her mommy?”
With community support, Kids Cancer Care is funding researchers at the Alberta Children’s Hospital and University of Calgary to improve outcomes for children like Sofia. These scientists are collaborating with researchers around the globe to develop and test new therapies that will save children’s lives without causing such devastating long-term health problems.
Life for Sofia and her family looks very different today and, while the Hirani family adjusts to a new normal, Kids Cancer Care is there to help them rebuild their lives.
“There have been many people and organizations to play a helpful part in getting our family and Sofia to this point, but Kids Cancer Care certainly is unique,” says Naushad. “Kids Cancer Care was there from the beginning with Pizza Nights on the oncology ward and they have been there ever since. They understand that dealing with a disease like this is a long-term issue for the family and that support is really very important for many months, and even years, after a major event like this changes a family.”
Sofia and Sonya are regulars at Kids Cancer Care’s weekly PEER* program, an evidence-based therapeutic exercise program developed by a multidisciplinary team of pediatric cancer researchers and clinicians at the University of Calgary and the Alberta Children’s Hospital.
During weekly PEER sessions, Sofia works with a one-to-one aide to rebuild her muscle and bone mass, cardiovascular capacity and immune system recovery, which supports her daily physiotherapy and occupational therapy routine.
Sofia and Sonya also enjoy Kids Cancer Care’s camp programs. Each summer, Sofia is a little more independent and a little more able to participate in a greater range of camp activities.
“Kids Cancer Care is one of the few organizations that actually looks after families,” says Shelly. “This is the only camp Sofia can go to that provides a one-to-one aide for her. For kids with needs like Sofia’s that is essential.”
The whole family enjoys Kids Cancer Care’s weekend Family Camps and year-round Outreach programs. These programs also offer Mom and Dad a much-needed break, while providing a healing community that understands.
“These kinds of events give our family a sense of belonging,” says Naushad. “And I think it helps our kids feel that there are people out there who do understand.”
Sofia is able to see a tutor each week through Kids Cancer Care’s Education Support Program. During one-to-one tutoring sessions, Sofia and her tutor work on her reading and math skills, filling a critical gap not met through school or therapy services.
Sofia will always have to work exceedingly hard for the smallest of gains, but with community support and her quiet and fierce tenacity, she will continue to make progress. Thanks to our generous community, she will receive the support she needs during her primary and secondary school years, so that one day she may pursue post-secondary studies. And, when she’s ready, Kids Cancer Care will be there with a scholarship to help her on her way.
A $10,000 gift will bring families together for healing and support at Family Camp.
Each spring and fall, Kids Cancer Care offers a weekend Family Camp, where families come together and enjoy family time—miles from the hospital and the daily demands of caring for a child affected by cancer. You can provide these families with a healing and supportive community, where they can relax, re-energize, and renew their spirits for the long journey ahead.
With a $1,500 gift, you can help send a child with cancer to camp for a week of friendship, laughter and fun.
Camp gives children a chance to escape the rigors of cancer treatment for fun-filled adventure with others their own age. At Camp Kindle, kids find much-needed camaraderie along with healthy doses of outdoor fun, including hiking, rafting, wall climbing, swimming, archery, the high ropes, and the giant swing. Over 75 per cent of childhood cancer survivors face at least one chronic health condition related to the cancer treatments that saved their lives. Camp is a safe place where these kids build confidence and resilience for what is often a life-long journey.
A $2,500 gift will give kids with cancer-related learning issues 75 hours of tutoring support.
Cancer is rarely over when the treatments stop. In addition to missing school while undergoing cancer treatments, children who survive cancer can face complex, long-term side effects that can impact their ability to learn and succeed academically. Our tutoring program carefully matches kids with qualified tutors, who provide tutoring sessions online or in the child’s home. These one-to-one sessions help kids in kindergarten through high school to re-build their learning confidence and competence.
A $5,000 gift will provide 100 hours of therapeutic exercise, helping kids to rebuild their strength and counteract the deconditioning effects of cancer treatments.
Research shows that children affected by cancer benefit from regular physical exercise. It helps reduce the deconditioning effects of cancer treatments and improve mental and physical well-being. Led by our PhD exercise specialist, our PEER exercise program was designed by an interdisciplinary team of pediatric cancer researchers and clinicians. It offers one-to-one and group-based exercise programs that help young people to rebuild fundamental movement skills (e.g., running, jumping, catching, and throwing), while also building muscle strength, aerobic capacity, flexibility, and balance.
A $500 gift will help kids learn to manage their fear and anxiety around invasive medical treatments.
Our certified child life specialist works one-to-one with children and in group settings to help them develop coping strategies to manage the stress and uncertainty of a cancer diagnosis. Using medical play, developmentally appropriate language and opportunities for emotional expression, our child life specialist helps children cope with painful medical procedures. Our goal is to introduce positive coping skills and strategies to transform their fear and anxiety into a sense of control, and even mastery, over their health care experience.
You can help a survivor fulfill their dreams with a $2,500 donation toward our scholarship fund.
Seventy-five per cent of childhood cancer survivors experience at least one chronic health issue related to their cancer treatments, which may impair their ability to learn and perform academically. These also kids miss more school and may fall behind their peers, putting them at a disadvantage when it comes to post-secondary education. Managing the permanent after-effects of cancer and its treatments also puts financial strain on the family, making higher education a difficult option for some families. The Kids Cancer Care Derek Wandzura Memorial Scholarship Fund, an endowed fund at the Calgary Foundation, was designed to level the playing field for survivors of childhood cancer by offering them a scholarship to a post-secondary institute of their choice.
A $100 gift will bring teens together for a session of skill-building and emotional support.
Our Teen Leadership Program offers teenagers affected by cancer a chance to give back to their community, while developing transferable life skills and benefitting from the healing support of their peers. Teens are responsible for designing and overseeing key projects throughout the year. The program culminates in a trip to a low-income region, where the teens volunteer their time to help local families in need. Responsible for raising their own money for airfare, meals and accommodation, these teens develop important leadership skills, while expanding their sense of social responsibility and philanthropic spirit.
If you want to make a bigger impact for kids affected by cancer and would like to discuss it with our team, please reach out to Genine Neufeld, Director of Philanthropy at 403 930 6951.