When a child has been diagnosed with a life-threatening illness, or has a serious injury, one thing is sure: life will never be the same. Our founder, Cindy Kerr, and her husband know this all too well. In 2002 their youngest child, Ryan, was diagnosed with osteosarcoma. Ryan, a happy, energetic, adventurous, and inspiring twelve-year-old, had cancer. He endured 30 months of chemotherapy, 15 surgeries, the amputation of his right leg, and over 150 days of physical therapy. The cancer came back five times and he beat it four.
While their life was radically different, Cindy still wanted Ryan to have the comforts of home. She began sewing whimsical pillowcases for their stays on the oncology unit of The Children’s Hospital of Philadelphia. Soon she was bringing pillowcases for the other children as well. Her efforts grew locally, through family and friends, and eventually led her to establish the nationwide non-profit Ryan’s Case for Smiles (CFS) in 2007.
CFS began with a focus on bringing comfort to children with cancer and other life-changing illnesses or injuries during their hospital stays. We operate through a dedicated volunteer network of 120 local chapters spread across North America. Each chapter manages thousands of volunteers who sew and deliver cheerful pillowcases, as well as host sewing days for children in over 360 hospitals. To date, CFS has delivered 1.9 million pillow cases and serves over 75,000 children and families annually.
Over that past few years, our mission has expanded. Today we support families, as well as the children, and focus on enhancing their ability to cope with the illness today and build resilience to thrive in the future. Through our work we have had the privilege of connecting with leading Clinical Psychologist Dr. Anne Kazak, who researches and writes extensively about the ongoing distress that some parents experience after a child’s illness.
In one study on pediatric cancer, Dr. Kazak found that 20% of families (30% of mothers) observed had at least one parent who had PTSD and posttraumatic stress symptoms (PTSS). These symptoms include:
- Re-experiencing the trauma through triggers
- Feelings of emotional numbness
- Hyperarousal (jumpiness, altered sleep patterns, trouble concentrating, irritability, feeling threatened)
- Constant fears and anxiety
But there is good news. What research has found on a consistent basis is that symptoms of trauma can be lessened, and well-being optimized through coping methods aimed at reducing stress. So to better serve families, we created CopingSpace.org – a website offering tips, strategies, and support for before, during, and after a child’s hospital stay.
Resources designed for children, siblings, parents, caregivers, the community and schools are all available. Additionally, we offer a special section on resilience because developing the ability to bounce back from adverse situations is critical to coping. Our hope is that whether you are a caregiver navigating your child’s treatment plan, or a member of the community looking to help lend a hand, CopingSpace.org makes it a bit easier to get through it all.