Henley Gieringer is a typical 7-year-old girl. She loves rainbows, unicorns, and anything that sparkles. She goes to dance and gymnastics and cheers at the local volleyball games. 

“If she could swim year-round in our backyard pool, she would,” mom and assistant principal Becky Gieringer said. “She will jump on the trampoline until it’s dark outside and would stay longer if we would let her.”

Henley is also a butterfly. Her skin is as delicate as butterfly wings.

She lives with the blisters, wounds and tears of Epidermolysis Bullosa, a life-threatening rare genetic disorder that affects the body’s largest organ: the skin, inside and out. 

International Epidermolysis Bullosa Awareness Week is Oct. 25-31.

Henley’s skin does not have the necessary proteins to bind the layers together, so her family has learned to adapt and spread the word.

Diagnosis

When Henley was four days old, her parents became concerned after large blisters came up on her big toes and skin came off her heels from kicking the bassinet.

“I knew this was wrong, so we went back to the pediatrician to see what was happening,” Geiringer said.

After 14 weeks and a series of doctor visits later, the family got the diagnosis. To get a sample for testing, a dermatologist rubbed on the little girl’s underarm with a pencil eraser until a blister quickly formed. That blister and blood sample gave the family an answer to their search.

“We didn’t understand what was happening,” Geiringer said. “This was something we have never heard of. No one we knew had ever heard of it either. But we dealt with it. We still are.”

EB comes in different forms. Henley lives with EB simplex, which affects 1 in 30,000 to 1 in 50,000 people. The condition, which begins at birth, can develop into adulthood.

“Her blisters have to be popped daily,” Gieringer said. “If we don’t, they will continue to grow and cause her more damage. She does not have the necessary proteins to naturally stop the blister from spreading.”

Adapting

However, she does have the spunk to live with EB and move on.

“Everyday we learn something new about this horrible condition,” Gieringer said, “but Henley is the strongest little girl we know.”

If she wants to participate in an activity, her parents sign her up, and then she decides if it is beyond her limits. 

“She is a strong self-advocate and could describe to anyone what her condition is and what it means,” Gieringer said.

Finding the right pair of shoes involves trial and error. In fact, she wore fluffy house shoes until she was 2. She also did not start walking until she was 18 months old, but she made up for it by reading and using full sentences by age 3.

She has never worn a regular pair of denim blue jeans because the fabric would damage the skin around her waistline. Instead, she opts for cotton shorts and leggings.

“After long days on her feet, she is ready to get home and put on her ‘cold sock,’ because the pain is pretty hard for her,” Gieringer said.

Spreading the word

For families like the Gieringers, the solution is a cure. 

The EB Research Partnership is dedicated to funding research to treat and cure EB. The foundation’s one-hour Venter into Cures digital show airs Nov. 20 at ventureintocures.org starting at 3 p.m. Central. The program will feature celebrities such as Eddie and Jill Vedder, Billie Eilish, Chris Hemsworth, Dave Letterman, Judd Apatow and Lukas Nelson, among others.

Another organization, Dystrophic EB Research Association of America, works worldwide to provide services and activities to patients, families, advocacy groups and medical professionals to improve their lives. DEBRA funds research worldwide, maintains an EB patient registry worldwide, and coordinates best clinical practices for EB care.

Until that cure is found, Henley will continue to live with EB, but it does not stop her.

“Every day, she has a smile on her face. Every day, she is eager to take on the world and prove everyone wrong,” Gieringer said. “We are the luckiest parents in the world because of our butterfly, Henley.”

(Amiah Balboa contributed to this report.)