Written By: Debbie Pecis
Cole Yahara sounds like a typical 10-year-old at first, rambling enthusiastically about video games, his desire to sneak a snake into the house, and getting on his two sisters’ nerves. The next moment, though, he sounds wise beyond his years, discussing the loneliness of having a chronic disease, and describing light as “Everything that makes you feel good: being with friends, family, and having fun.”
The “light” Cole describes relates to power breathing, which Cole learned during martial arts therapy. Cole was diagnosed as an infant with SCID, or Severe Combined Immunodeficiency. SCID is a rare condition that leaves him without an immune system and requires monthly IV immunoglobulin transfusions to keep him alive. Cole’s mom, Amy, learned about Kids Kicking Cancer and the Heroes Circle program when she was on the Hematology/ Oncology floor at the hospital. She initially hesitated to reach out as Cole does not have cancer, but made the call anyway. It paid off. Cole’s entire family was welcomed with open arms, and the results have been astounding.
“They get a sense of normalcy,” from the program, says Amy. “That was important because he felt like an outlier.” Cole joined a Kids Kicking Cancer martial arts therapy class in Southfield, Michigan, attending multiple days a week to learn to punch, kick, and utilize techniques like body scans and power breathing to manage pain.
For Cole, who lives a very isolated life, the big win was meeting other children with their own health struggles. Participating in the Heroes Circle removed the sense of loneliness that sometimes left him feeling depressed. “My friends have to deal with cancer or other stuff too,” Cole says.
“That makes me feel like my life is not useless… that makes me feel nice, and doesn’t make me feel lonely.”
As Cole’s SCID leaves him incredibly vulnerable to illness, activities in his life have always been extremely restricted. When the Covid pandemic hit in March of 2020, life for the Yahara family got even more isolated. Still, the Heroes Circle program continued, with classes pivoting to virtual classes that keep Cole connected. Kids Kicking Cancer has been “awesome” about creating drive-by events for holidays like Christmas and Halloween, when Cole and his sisters decorated their car and got to wave to other families and pick up goodie bags. And for a boy who cites Science as his favorite class, online offerings with KKC and partner Cranbrook have been amazing.
Cole’s parents appreciate the support Kids Kicking Cancer has provided for their entire family. Amy is grateful about how well the organization includes all their children; when Coles gets a gift, her daughters get gifts. This is important as the whole family is affected by Cole’s illness; Coles’ sisters forgo many typical childhood experiences like sleepovers to keep their brother safe. Cole’s dad James advises parents in similar situations to get involved. “Join,” he says. “Start going. Include the whole family. Do the extra events. Do the classes, do everything…it can only impact your family in a positive way.”
Cole summarizes all the challenges going on around him in two words: “Stuff happens.” For his parents, Cole’s struggles are far more than stuff. “When your kids are sick and there’s nothing you can do but watch them suffer, it hurts. It’s painful,” says Amy, who cites using body scans to help Cole ease his anxiety when he gets treatments. For James, Cole is truly a hero. “While he does struggle, he’s still happy, he still goes after life with an enjoyment, he still loves being Cole…and Kids Kicking Cancer has helped him with keeping him in the positive.”
Cole, of course, has his own view on how Kids Kicking Cancer has supported him. With a smile, he says, “It has really gotten me in the fighting spirit.”