Holy Rosary Family Relies On Faith To Cope With Kids' Rare Disease

On a recent fall day, sixth graders at Holy Rosary School in Evansville took a walk and prayed the rosary together. Their prayers were in honor of their classmate, Sophie Schulz, who suffers from epidermolysis bullosa disease. Their walk together ended as they sang Sophie's favorite song, "She's a Butterfly."

Epidermolysis bullosa has been named the "butterfly disease" because of the fragileness of the skin of someone who has it.

Sophie's diagnosis goes back to the first day of her life. Her mom, Lori, had a normal pregnancy, but when Sophie was born skin was missing from her left leg. A medical team rushed her to the hospital’s neonatal intensive care unit, and soon her parents heard the terrible news: their precious newborn daughter had a disease. They were told it was chronic, and life-threatening, and that there was no cure.

"She's missing a protein in her skin, the glue that holds everything on," Lori says, explaining that her 11-year-old daughter has constant blistering of her skin, which can be caused by heat, friction and movement. That means she can't be in severe heat. It means problems when she is dressing, when she is sleeping, even when she is getting into a car.

Read the text of a talk Sophie recently gave to her Holy Rosary schoolmates about epidermolysis bullosa

Because of the disease, there is a painful cycle of skin tears, blisters and regrowth.

Lori remembers her own pain when she heard the diagnosis almost 12 years ago. And she remembers the strength, like that of a mother lion with a cub, which developed within her. "I wanted to keep that baby alive, and I prayed to God to keep her alive. I loved her, and I put my trust in God."

Lori and her husband, Pat, have been told that they are both "one in a million" carriers of a recessive gene for the disease. They didn't want Sophie to be an only child, and when Sadie was born a year later, they were relieved beyond words to know she didn't have the disease. Then Sam arrived. Now he is eight, and his younger brother, Simon, is six.

When Sam was born, there was more bad news. He also received a diagnosis of epidermolysis bullosa. "That was really hard," Lori remembers. "Our faith was shaken." During her pregnancy, "I was hoping and praying and pleading for a healthy baby."

She learned that "when you pray and you don't get the answer you want -- that's faith."

Both Sophie and Sam must wear bandages which cover the open wounds on their bodies. Lori changes those bandages every day after school, and the process takes about three hours. She wraps their arms from their elbows to their fingers. Then each finger is individually wrapped, allowing mobility. She also wraps their legs from their knees to their ankles. Both of their torsos are covered with pads.

"They always have an open wound somewhere," Lori says.

Despite the disease, both children have been able to stay active in school and in extra-curricular activities. "Sophie serves at Mass, and she cheers, and she's on the student council. Sam plays all the sports that he can. We try to help them participate in the level that they can."

The children started in preschool classes at Holy Rosary parish, and continue in the elementary school there. Lori says the entire school community has embraced the children "and that's a good feeling for Pat and I."

Sometimes she asks, "Why us? Why our kids?" That's when she seeks out her pastor, Father Bernie Etienne. "He tells me that when Jesus gives heavy things to people, he holds them a little closer to his heart."

It's not always easy. And when it gets tough, Lori and her husband read these words written on a crumpled piece of paper on their bathroom mirror:

If God brings you to it, He will bring you through it.

Happy moments, praise God.

Difficult moments, seek God.

Quiet moments, worship God.

Painful moments, trust God.

Every moment, thank God.

Lori says it's "hard to see the kids in pain and not be able to fix it. To keep our spirits up, we try to focus on what we do have. I can't live angry and sad. We try to give them a happy life. I'm only able to do this because of my faith and the Holy Spirit. I'm not saying it isn't hard, but our faith gets us through a lot."