UARU
Meet the Ukrainian Child Struggling With Rare "Butterfly Disease"
21 August, 2017

Every Thursday at 8:30 a.m., Rustam studies Spanish and English. He is thirteen years old and an excellent student. He has already completed the eighth grade, but has never sat through a lesson at school. He only attends the the school year’s opening and closing ceremonies. Instead, the teachers come teach him at home.

Rustam has congenital epidermolysis bullosa, a rare genetic disease that makes a person’s skin extremely thin and sensitive. Even a touch can leave a wound.

People with this disease are frequently referred to as “butterfly children,” because their skin is reportedly as fragile as butterfly’s wings. Since German dermatologist Heinrich Kebner first described epidermolysis bullosa in 1886, the disease has been considered incurable.

Symptoms of the “butterfly disease” are visible at birth. However, there are four forms and more than 35 different types of the condition. All of them are caused by one thing: a lack of structural proteins in one of the layers of the skin or in the mucous membranes.

In Ukraine there are 190 people with epidermolysis bullosa. Most of them are children.

Rustam loves Spanish. In his free time, he watches films and videos in the language. Ukrainian language, literature, and learning work skills are also among Rustam’s favorite subjects.

“He waits for his teachers every day,” his teacher says. “He studies like all other children, but he gets fewer hours than in school.”

“I think that children who are homeschooled are a bit deprived of time. But they have to accomplish the same things as everyone else at school. Still, Rustam and I will complete everything. There’s nothing we can’t accomplish. And he has the desire [to study].”

Rustam is learning computer programming. He wants to become a professional programmer. He even makes websites on order and earns money for them. He does all this despite the fact that, over the years, all his fingers have grown together.

Rustam has already earned a small salary for his web design work. When the musical ensemble “Lisapetniy batalion” came to Obukhiv, where the Tymoshenko family lives, he even bought tickets for his mother.

“I wanted to go, but we had no money for tickets,” his mother, Lyudmyla Tymoshenko says with pride. “And Rustam paid for the tickets himself. He tries hard. He sells sites. He bought himself headphones and a mouse.”

Rustam was diagnosed with epidermolysis bullosa right at birth. His family had never before even heard of this disease.

“No one showed him to me immediately, just to my mother and my husband,” Lyudmyla says. “My husband said everything was fine, he just had a wound on his leg. As a mother, that interested me.”

“When the doctors and nurses were in their offices and wards that evening, and Rustam was in the intensive care unit in an incubator, I went to have a look,” she says, wiping away a tear. “I just hugged the incubator and said, ‘I won’t even touch you with my finger, just survive!’”

Because of the constant wounds on his body and legs, Rustam learned to walk very late. His mother says he grew to be a very cautious child so as not to fall and injure himself.

Like all “butterfly children,” Rustam needs special foods and bandages. Lyudmyla changes Rustam’s bandages once every two days. The take here is to prevent infections and traumas. Children with epidermolysis bullosa also usually need to eat protein-rich foods prepared in a blender — nothing hard or spicy.

In the small town of Obukhiv, resources for Rustam are limited. However, one positive moment came when the mayor created a special group at the local kindergarten for children with disabilities. However, the other parents objective to Rustam.

“I brought a certificate that it’s a genetic illness and not contagious. But the director still said we can’t attend that kindergarten,” Lyudmyla says. “Rustam would wake up so happy in the morning knowing that he was going to kindergarten. And when I told him we aren’t going, I just couldn’t explain why...He was four years old. It was a shame.”

/Reporting by Kateryna Kunytska and Oleksandra Chernova