Kids Cancer Care Foundation of Alberta
Our Story Why We Exist
“After surgery, Sofia suffered from cerebellar mutism, which means she could not move, talk, walk, or even see to interact with us. She must have been so terrified in those initial days, to wake up in that state, with tubes all over, not being able to do anything but cry.” —Naushad Hirani, Sofia’s father
Days before her surgery, Sofia was jumping on the trampoline and performing summersaults in gymnastics class. While that carefree little girl is gone forever, your support 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 course of treatment to come, while also helping her to rehabilitate and relearn to move again.
They researched the side effects of craniospinal radiation in excruciating detail and finally agreed to a regimen of high-dose chemotherapy in the hopes that it would eliminate the cancer and minimize the need for radiation.
“Unfortunately, Sofia couldn’t catch a break,” says Naushad. “Even after the ‘atom bomb’ of chemotherapy she endured, her cerebrospinal fluid still showed cancer cells.”
High-dose radiation was her only hope for survival.
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.
But 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.
“Unfortunately, Sofia couldn’t catch a break. Even after the ‘atom bomb’ of chemotherapy she endured, her cerebrospinal fluid still showed cancer cells.” Naushad, Sofia’s Dad
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 conventional 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?”
At age four, little 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?”
Your financial support is helping researchers in the Experimental and Applied Therapeutics (ExpAT) research effort at the Alberta Children’s Hospital and University of Calgary to improve outcomes for children like Sofia.
ExpAT researchers are collaborating with researchers across the hall and around the globe to develop and test new drugs that will save children’s lives without causing such devastating long-term health problems.
CAMP & OUTREACH
“The memories we made until this point were really blissful. When I look back at them now, they almost seem like a fairy-tale.” –Naushad Hirani.
Life for Sofia and her family looks very different today and, while the Hirani family adjusts to a new normal, your support helps families like theirs get outdoors and have fun as a family.
“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.”
Thanks to you, Sofia and Sonya are regulars at our weekly PEER* program. PEER is an evidence-based exercise and physiotherapy program developed by a multidisciplinary team of researchers 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. Thanks to you, Sofia and Sonya also enjoy our SunRise day camp.
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 takes part in our weekend Family Camp at Camp Kindle and they enjoy our year-round Outreach programs, including the annual Family Ski Day and Polar Express train ride, courtesy of Aspen Crossing.
The Hirani children were overjoyed to meet Santa last year on the Polar Express. And Sofia was thrilled to go adaptive skiing during our Family Ski Day, while Shaan and Sonya skied all day. “She was out there for two hours and she didn’t want to come in,” says Shelly.
Thanks to you, the Hirani children are able to get outdoors and be active together as siblings.
“This is so important, because Shaan was older when Sofia was diagnosed and he really misses his sister,” says Shelly.
Camp and Outreach programs also offer Mom and Dad a much-needed break, while providing an opportunity for them to connect with other parents in a supportive 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.”
EDUCATION SUPPORT & SCHOLARSHIPS
With your continued support, Sofia is able to see a tutor each week through our Education Support Program. During one-to-one tutoring sessions at home, 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 your support and her quiet and fierce tenacity, she will continue to make progress. Thanks to you, 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.
Our Impact What We Do
“When your family has to deal with a child with cancer, it brings along many painful experiences, tears, fear and heartbreak. It is an absolute joy to watch my children forget about treatment and just be children again. Thank you Kids Cancer Care for making it possible for our children to smile again!” - Parent
Our programs are uniquely designed to meet the needs of the whole family at each stage of the cancer journey, from diagnosis through treatment and beyond. In 1986, when Christine McIver’s son Derek was diagnosed with a malignant brain tumour, there were very few programs in the province to help children and families navigate the frightening diagnosis of childhood cancer. It all began with a mom, volunteering in her basement, to make a better future for children diagnosed with cancer.
Today, Kids Cancer Care is one of the largest childhood cancer research funders in the country. The foundation now offers more than 20 year-round and summer camp and outreach programs, along with education support program and services to Alberta families. Kids Cancer Care is one of only a handful of charities in North America dedicated to supporting the entire continuum of childhood cancer, fighting the disease on all fronts, with laughter at camp, the best treatments at the hospital and innovative science in the lab and brighter futures through education support and post-secondary scholarships.
Our Programs How We Do It
The Kids Cancer Care Foundation of Alberta is passionately dedicated to helping young people and their families affected by childhood cancer survive and thrive in body, mind and spirit. Our programs are uniquely designed to meet the needs of the whole family at each stage in the cancer journey, from diagnosis through treatment and beyond. The Foundation is committed to changing the course of children’s cancer by providing programs and funding in four key areas:
CAMP - You can help kids be kids again. Cancer is a frightening and lonely experience for kids. It shatters their confidence and steals their innocence. Our camps offer children a chance to escape the rigours of cancer treatment for days of fun-filled adventure with kids their own age. At Camp Kindle, they find friendship and new reserves of confidence and strength – along with a healthy dose of mischief laughter and fun.
OUTREACH - You can help families escape the demands of cancer. Our family outreach programs are offered all year long. Whether it's a hockey game, yoga class or laser tag, our programs for tots, teens, parents and the whole family provide a fun, safe place to spend some time with other families affected by childhood cancer.
RESEARCH - You can help give kids a fighting chance. Kids Cancer Care is committed to being a catalyst for groundbreaking research. Our investment in the experimental and applied therapeutics program at the Alberta Children’s Hospital and the University of Calgary is making research into the most difficult childhood cancers possible, giving children access to new treatments where conventional treatments have failed. For some kids, this means a second chance at life.
HOSPITAL PROGRAMS - You can help kids heal. Our goal is to see every child with cancer in Alberta receive the best care without leaving the province, so they can be close to their family and friends when they need them most. By funding a range of hospital programs from specialized medical equipment to bereavement programs and educational seminar, we’re making sure Alberta children with cancer and their families heal at all levels – body, mind and spirit.
SCHOLARSHIPS - You can help kids pursue their dreams! Lengthy stays at the hospital lead to missed school and missed opportunities. Cancer treatments such as radiation, chemotherapy or surgery may lead to crippling long-term disabilities that seriously impair the child’s quality of life. The Derek Wandzura Memorial Scholarship Fund was designed with these realities in mind. Awarded annually to childhood cancer survivors in southern Alberta, the bursary gives these young people that all-important boost they need as they begin to follow their dreams. Kids Cancer Care also offers support for young people disadvantaged by cancer during their primary and secondary school years.
EDUCATIONAL SUPPORT - You can help kids get back on track! Survivors of childhood cancer often face long-term side-effects, which are complex and can impact their ability to learn and perform academically. Kids Cancer Care actively supports children disadvantaged by cancer, throughout their primary and secondary school years with tutoring and a range of other educational support services.
Our Requests What You Can Do
Family Camp - Camp Kindle
Your $10,000 donation will bring families together at Family Camp
Each spring and fall, Kids Cancer Care offers a weekend Family Camp, where families come together and enjoy family time with each other, miles from the hospital and the daily demands of caring for a child affected by cancer. Help provide these families with a healing and supportive community, where they can relax, re-energize and renew their spirits for the long journey ahead.
Education Support — Tutoring Services
Your $2,500 donation will help recruit, screen, match and retain specialized tutors.
Childhood cancer is rarely over when the treatments stop. Seventy five per cent of survivors face complex, long-term side-effects that can impact their ability to learn and perform academically, leading to lower levels of education and poorer employment outcomes for some. By investing in our Education Support Program, you can help turn things around for these kids by helping us to recruit and screen, match and retain specialized tutors. These tutors will design customized learning plans and meet one-to-one in the child’s home for weekly tutoring sessions, helping the child to develop the tools and skills they need to succeed at school.
“People need to understand that kids affected by cancer are going to be behind in school. I don’t know of any child, who’s had cancer, who wouldn’t benefit from the Education Support Program. These kids need one-to-one help. They need repetition. They need very specialized, consistent, long-term support sustained over time. And they need patience. That’s what these kids need. I am seeing the progress in Erik — not leaps and bounds — but he is consistently progressing over time. It would devastate us if we didn’t have this tutoring support.”—cancer mom
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 complication related to their cancer treatments, which may affect their ability to learn and perform. These young people often 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. With a $2,500 investment, you can help a young person follow their dreams through advanced education.
Send a Kid to Camp
Your $1,500 donation will send a kid to Camp Kindle for one week!
Camp gives children a chance to escape the rigours 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.
Camper Meals – Camp Kindle
With your gift of $75, you can feed a child for one day at Camp Kindle
Children affected by cancer need to eat nutritious, balanced meals at breakfast, lunch, dinner, along with a few healthy snacks, to keep them going all day at Camp Kindle. Our chef and kitchen team make sure that all the meals at Camp Kindle are delicious and healthy and that any special dietary restrictions are met. Help nourish a happy camper this summer at Camp Kindle with a gift today.
See more ways to get involved at Kids Cancer Care website - Get Involved.