“When Rylan was born, they went to clean him and his skin wiped right off his hands and feet.”
Ann Mohr and her husband, Mark, had no idea the challenges their son would face when he was born in 2006.
Shortly after birth, a local dermatologist diagnosed Rylan with epidermolysis bullosa, or EB, a rare disorder that causes the skin to blister at even the slightest irritation.
The Mohrs didn’t know how to care for their newborn’s unique needs and didn’t feel comfortable taking him home from the hospital.
“As a parent, you expect to have a healthy baby and a healthy child growing up,” says Mark. “Having a baby with health issues is very stressful and something nobody expects to have.”
When he was 3 days old, Rylan was transferred to University of Iowa Stead Family Children’s Hospital. He spent the first three months of his life in the Neonatal Intensive Care Unit fighting off several life-threatening infections in the wounds created by his skin condition.
During that time, Ann and Mark spent hours with Rylan’s UI Stead Family Children’s Hospital nurses each day, learning how to properly drain their son’s blisters, treat his wounds with medicine or lotion, and bandage his skin correctly.
“This is really the place for any critical or skilled care,” says Ann. “I can’t even put into words the kind of care we had and Rylan had when he was here.”
Rylan’s care team also coordinated home nursing for the family, and Ann left her teaching job to provide Rylan with the full-time care he needed.
“He would scream at night and he would itch his skin off, so I would have to sleep by his bed and hold him down all night long,” remembers Ann.
When Rylan began walking at age 3, he started physical and occupational therapy. By that time, his parents had learned how to adjust to Rylan’s needs—which clothes he could handle, how he could sit in a car seat, and how long he could play with certain toys.
The Mohrs credit Rylan’s neonatology, dermatology, gastroenterology, surgery, and emergency care specialists for the progress he has made.
“UI Stead Family Children’s Hospital has really changed our lives,” says Mark. “They brought Rylan along from a disease which he was not expected to live more than a year to being a very healthy 8-year-old boy.”
Rylan still undergoes wound care twice a day—a process he endures without complaint or pain management. He wears bandages on his feet to prevent blisters and uses a feeding tube if his wounds become more severe.
Despite his condition, Rylan lives life to the fullest. He loves watching, reading about, and playing sports when he can, and he keeps stats for his older brother—and best friend—Andrew’s baseball team.
“Rylan’s attitude toward EB blows me away,” says Ann. “He really doesn’t care that he has this skin condition. He knows how to protect himself, but he’s also going to enjoy life every single day.”