The day after William was diagnosed, I was in the hospital, desperately searching on the internet for information relating to Pearson Syndrome. We got in touch with a family whose son has Pearson Syndrome and she invited us to join the Pearson Family Facebook page. I spent hours scrolling through pictures, posts, comments and discussions on the page.
Since then, the group has been a source of emotional support and critical information. Though none of the kids experience the same symptoms, it is obvious that PS parents are the experts, even among doctors. We provide each other information ranging from medicine doses to potential explanation for rashes. We support each other on birthdays, doctor appointments and anniversaries.
I have become Facebook friends with quite a few of the parents, and feel a surge of happiness when they post normal pictures—their kids in an art show, a family trip or a school day. On the other hand, when there is a picture of a child in the hospital or feeling sick, I get a pit in my stomach that only a mom of a medically needy child can understand. Last weekend, I could barely get myself out of bed when a father posted about the death of his beautiful daughter.
When Jeff and I founded The Champ Foundation, we founded it in honor of William. But over the past few months, we have learned the stories of other children struggling and fighting this disease. So, we decided it was critical to include them on the website. As parents send me their child’s bio and picture, I will be posting it on our website under the More Champs tab. I hope you read their stories to get a broader understanding of how terrible Pearson Syndrome is. The Champ Foundation aims to find treatment and a cure for these children. They are, without a doubt, Champs.