AUSTIN (KXAN) — Kate Holler’s large stash of medical supplies are for her 2-year-old daughter, Rowan. The toddler has a rare skin disorder called Epidermolysis Bullosa, or EB for short.
Any bump, bruise or brush up can cause Rowan’s skin to slide off. Holler remembers the day her daughter was diagnosed.
“We were told not to Google it a few times by different doctors, that it would be upsetting,” Holler said.
Doctors commonly called patients who have it “butterfly children,” because their skin is as delicate as butterfly wings. The disorder is so rare, only about one in every 20,000 children are born with it in the United States, according to the Dystrophic Epidermolysis Bullosa Research Association of America.
We try to make sure Rowan’s life is as happy as possible
Every move — bath time, play dates and naps — can lead to large, painful blisters on Rowan’s skin. Most of her little body is covered in protective bandages. Rowan has a feeding tube because solid food would tear the skin in her mouth.
There is no cure and doctors treat it the same way as patients who have second-degree burns. “We try to make sure Rowan’s life is as happy as possible and that she’s as pain-free as possible,” her mother said.
Rowan needs at least 10 medications every day. When the family adds in ointments, bandages and doctors visits, medical expenses cost between $5,000 and $10,000 every month.
“I don’t know anybody personally that can afford that out of pocket,” said Jason Holler, Rowan’s father.
But, the Hollers’ may soon be strapped with covering all of their daughter’s medical expenses. Their children’s Medicaid stopped this week because errors in paperwork say the toddler lives in a nursing home, instead of at home with her parents. That error also stalled the family’s quest to get Rowan in the state’s Medically Dependent Children Program, which pays for added care for fragile patients, who do not live in a nursing home.
The family also had a home nurse visit several times a week. That has stopped, too. The Hollers’ say they are working to fix the clerical mistakes in their daughter’s application; but, it is tough because their daughter’s needs are hard to understand.
“Children who have rare disorders, just from our experience can be overlooked and set aside as far as getting help,” the mother siad.
The state said its Medically Dependent Children Program provides extra services to families, like home nurses, medical supplies and minor home modifications.
After the story aired, many KXAN viewers asked about how they can help the family. The family says while they have a GoFundMe account for Rowan’s care, they would actually prefer for people to donate to the either of the two major EB nonprofits to help further research and awareness.
“The way we think about it now, is we urge those who want to make a difference to donate to research or awareness organizations, because we will always have trouble paying for care until there is a treatment or cure for EB,” said Kate.
Links to the EB nonprofits: