Pleasant Valley girl faces challenges of a rare skin disease
According to the website Debra of America, 13-year-old Daisy Sherman is a butterfly child. She’s beautiful but fragile, and if you rub her wings, she won’t be able to fly.
Since her birth, Daisy has had epidermolysis bullosa, a rare connective tissue disorder that affects one out of every 20,000 children born in the United States. When she first came into the world, she had no skin on her right leg. Her veins and muscles were clear in sight. She had no skin on one arm and one hand and two large blisters on her chest. A spot on her leg never healed.
“We were told she wouldn’t make it through the night,” said her mother, Dana.
A bleak outlook
Currently, there is no cure or specific treatment for EB. The most noticeable symptom is extremely fragile skin that blisters or tears from minor friction or trauma. Daisy’s multiple symptoms made her condition more complicated. She has damaged vocal cords, acid reflux that hinders her air supply, and an extremely low heart rate.
“Although my husband and I carry mutated genes, we never had anyone in our families with this condition,” Dana said, “and our other four children are just fine. We had no idea Daisy would be born with this condition.”
Doctors at St. Luke’s in Bethlehem had never seen a patient with EB, so Daisy was transferred to a Philadelphia hospital where she spent three months fighting for survival. Doctors there took biopsies of her skin that were inconclusive. Daisy was placed in isolation by her dermatology team because she was contracting infections from an open-air crib.
Once the diagnosis was confirmed, Dana and her husband, Patrick, had to take a crash course on how to take care of their young child.
Dana explained the process. “The skin is the first barrier to preventing infection. Since Daisy had no skin on parts of her body and blisters on other parts, we had to learn how to bandage her.”
Help through the hurt
The Shermans then went to the internet and found Cristina Perez, the original butterfly girl, whose desire was to be able to live independently with EB. Perez offered helpful tips with everyday living and even suggested a special procedure for putting Daisy into a car seat.
Despite the excellent medical care their daughter was receiving, the Shermans moved from Brodheadsville to Florida where Daisy, then 3 years old, seemed to be having fewer infections and blisters.
“We don’t know why she was better,” said Dana. Maybe it was the climate. We do know she did well in the pool where there was no friction on her body that she gets from normal physical therapy.”
But other issues were surfacing.
“Her joints would pop out due to a lack of muscle development. Her heart rate, even during activity, was very low. Doctors considered putting in a pacemaker, but it was too risky because Daisy was allergic to many of the antibiotics, especially the topical ones that had been applied to her skin.
In some cases, bone marrow transplants have helped improve the health of an EB patient’s skin, but with Daisy’s acid reflux that causes severe gagging and vomiting issues, she was not a good candidate because pre-surgery chemotherapy was too risky.
A few years ago, the Shermans moved back to Brodheadsville where Daisy could attend Pleasant Valley Intermediate School for only half days because sitting too long was not good for her body. With a compromised immune system, a new infection soon occurred to her right leg, which had not completely healed since she was born.
Help was on the way. In June 2020, Patrick’s Pals, a nonprofit foundation that provides children with multiple disabilities equipment and therapies necessary for them to function on a daily basis, secured funds to renovate the Shermans’ basement and install an endless pool for Daisy to enjoy and feel free from pain.
Dana originally contacted DLP Realty because they were going to sell the house and possibly move back to Florida. However, DLP arranged for the basement to be waterproofed and the pool to be installed.
“We’ve only had the pool for a short time, but she loves it,” Dana said.
‘Hurt me to help me’
Through Debra from America, the Food and Drug Administration contacted the Shermans two years ago and asked if a caregiver would testify to a panel of doctors about EB. When Dana told her daughter, she looked at her mother and said, “Let me do it.”
Daisy sat before the FDA panel in Washington, D.C., with a prepared speech. She spoke about her body not being able to produce protein necessary for healthy skin. She talked about the weakening and the scarring of her veins, and that she often needed oxygen to breathe.
“I get so scared when I feel my chest tightening and I can’t call for help,” she said. She informed the panel that she had difficulty undressing herself, tying her shoes, and standing or sitting for long periods of time. She had missed seven months of school.
“I’m sad and lonely,” she said. “I have no lasting friends. I can’t go to parks or play organized sports. When I go into public places, people make faces and point and stare at me.”
Daisy added that it takes four painful hours to have her bandages changed.
“I feel bad for my mommy and daddy. They have to hurt me to help me.
“When I was 3 years old,” she said, “my parents were told I had six months to a year to live,” she said, “and now I’ve lived 11 years. I’m a happy and a hopeful kid, but I’ll never go to a prom or drive a car and I’m afraid of dying young.”
Daisy ended her speech by asking the panel to imagine if they had a child like her and what would they would have to do about it.
She also serves on the youth advisory council for Children’s Hospital of Philadelphia.
Awareness and acceptance
Despite her battles with insurance companies to pay for her daughter’s treatments, Dana is grateful for the help Daisy has gotten. She’s thankful for support throughout the pandemic.
“Our prayers have been answered,” she said.
Whenever she worries about skin cancer or another event when Daisy needs immediate oxygen to keep her breathing, Dana recalls the day she saw her 3-month-old daughter smile for the first time. She knew then that her daughter had a strong will to live.
“Daisy is a fighter. She has incredible spirit. She wants to be a normal kid. On her good days she likes to cook and bake and play video games. She wants to take guitar lessons. She wants to go to culinary school.”
Yet not a minute goes by that the Shermans can ignore her affliction.
“Daisy understands her limitations. She can’t shake hands or hug someone because hours later, she could have new blisters.”
When asked what purpose would be served by telling Daisy’s story, Dana replied, “An awareness of this very rare disease is good, especially if it helps others. We hope there is an acceptance, too, an understanding that my daughter is trying to do her best to be a normal kid and live a normal life.”
Beautiful yet fragile like the butterfly, Daisy Sherman faces challenges each day, but with courage and resolve, she does her best to spread her wings and fly.