Eighteen years ago, Pat and Lori Schulz welcomed their first child, Sophie. While the pregnancy was healthy, Sophie was born without any skin on her left leg and other areas of her body. That night, she was diagnosed with epidermolysis bullosa, a rare genetic skin disease that causes fragile and blistered skin.
Pat and Lori learned they are rare carriers of the disease. Their second child Sadie and youngest Simon both are healthy, but Sam, the couple’s third child, also was born with EB.
The disease is estimated to affect 1 in 30,000 to 50,000 people and is nicknamed the butterfly disease as it causes the skin to be as fragile as the wing of a butterfly. Blisters are caused by heat and friction and can affect anything that is part of the epidermis, even internal organs. Daily bandaging is needed, and the wounds can cause issues with growth in children, among other complications.
“People can’t fathom you can be in pain every single day of your life,” says Sophie. “I wish sometimes people would recognize just because we’re physically disabled doesn’t mean we can’t function like everyone else.”
Sophie will graduate from Reitz Memorial High School in May and plans to begin core classes next year at Ivy Tech Community College. Sam will finish eighth grade at Holy Rosary Catholic School this year and manages several sports teams for Holy Rosary and Memorial High School.
Currently there is no cure for EB, but family, friends, and community members have participated in a walk for the last five years to raise awareness and funds. The 2018 walk raised about $15,000 for the Epidermolysis Bullosa Medical Research Foundation. Memorial also hosts a basketball game at the beginning of each year in support of Sam and Sophie.
“I think a lot of times we’re uncomfortable approaching someone with a disability, so we choose not to,” says Lori. “But that’s what we were put on this earth to do — to lighten someone’s load or help make someone’s day. I think Sophie and Sam serve as a pillar of strength for all people. When you see what they go through and continue to get up, go to school, and try to be the best they can be, it’s inspirational for all of us.”
