Rare Diseases

Hospital staff helps high school senior with rare skin disease attend prom

Photo courtesy Cincinnati Children's Hospital Medical Center

Photo courtesy Cincinnati Children's Hospital Medical Center

A Columbus, Ohio, high school senior who had been bedridden for five months due to a rare and painful skin condition was able to attend her prom this year after being successfully weaned off her pain drip. 

Natasha “Tasha” Starkey has Epidermolysis bullosa (EB), a disease that causes blisters and scarring from friction, even if it is minor.  A team of doctors, nurses and staff at Cincinnati Children’s Hospital Medical Center, where Starkey receives treatment nearly every Wednesday and Thursday, helped the 19-year-old get dolled up with painted nails, curled hair, a dress, jewelry and heels to attend the dance. Some of the staff also shared their favorite dance moves to help Starkey prepare.

Her mother, Michelle Starkey, helped make the night happen after her daughter expressed interest in going.

“I know Tasha has been wanting to go to prom even last year when she was a junior and at home, and she wasn’t nearly this sick,” Michelle Starkey said in a mini documentary released by Cincinnati Children’s.

Starkey said attending prom was important to her because it was a “normal” thing teenagers get to do. “I just wanted to be like Cinderella for a night,” she said in the video.

According to the Mayo Clinic, most forms of EB are inherited and symptoms usually appear in infancy or early childhood, but some people develop signs and symptoms during adolescence or early adulthood. There is no cure for EB, and treatment consists primarily of easing infection and itching, and preventing wounds and pain. Severe cases can be fatal.

Before the dance, Starkey’s caregivers expressed concern over whether she could be weaned off her pain drip in time to leave the hospital and return within eight hours.

“We were going to try for it,” Ken Goldschneider, MD, director of the hospital’s pain management center, said in the video. “We set the groundwork for testing to see if she could make a trip away from the hospital without her pain pump. Each day of testing, it went well and that alone was an accomplishment.”

Goldschneider said in the video he recalled his daughter going to prom and pointed out the importance of the rite of passage for teens.

“Children have got to be able to dream,” he said. “To know she was out on the dance floor, socializing, getting the total experience and loving it, feeling confidence, it just made us all here so excited.”

Starkey, who has undergone over 40 surgeries for EB, described the prom as “fancy” and said she had fun.

“I don’t always feel pretty and I don’t always get to dress up, so that was really fun to go and get dressed up,” she said. “I got meet some new friends who danced with me in my wheelchair on the dance floor.”