In October 2003, 14-year-old Madison Woytovich was having her hair braided by her mother, Betsy, when large chunks of Madison's hair began falling out. During the next seven weeks, 75 percent of her hair disappeared.
When meeting with the doctor, Madison was diagnosed with alopecia, an autoimmune disease in which the immune system accidently attacks hair follicles and causes hair loss. Her family was devastated when he told them that the type of loss Madison was experiencing would most likely lead to greater, if not complete hair loss.
As they drove home that day, Madison's parents began crying, imagining the struggles their daughter would face in the future. But when young Madison asked why they were so sad, they realized that in order to keep their daughter strong, they had to be strong themselves.
Building a Support Group
Madison and her family began searching for a support network, only to find that there was no organization for children with alopecia. Despite her courage, Madison's father Jeff was still worried about how her high school years would turn out.
In August 2004, Jeff and Betsy Woytovich created the Children's Alopecia Project (CAP), which has grown to 15 support groups in the country, including foreign branches in Hong Kong, Canada, South America, and Russia.
“When the doctor told us, I was devastated,” said Betsy. “But creating CAP and being able to talk about it with other families made a big difference for everybody. It helped us with accepting things as they are and moving forward.”
CAP concentrates on three goals: building the children's self-esteem, providing support to parents, and raising awareness about alopecia.
Although children with alopecia are fortunate not to have any physical pain and cannot pass it onto others, it can still take a toll on their emotions. By helping children with alopecia get together and see that they're not alone, CAP provides a support network for families. The idea is to help children accept themselves despite the diagnosis.
“CAP's mission was about how we can support the kids now and not about treatments or a cure,” said Catherine Tiley, whose daughter, Samantha, was diagnosed with the disease. “The goal was to make sure our kids were comfortable with themselves.”