Ichthyosis: Amálka (10) suffers from an extremely rare skin disease

She is probably the only one in the Czech Republic with this type, there are only dozens of such children in the whole world. The skin all over Amálka’s body began to crack and cause immense pain right after giving birth. She is extremely sensitive to injury and the disease also limits her movement due to the way she tenses up during it. He practically has no eyelids, so he must carefully moisten his eyes with artificial tears.

Despite a difficult fate, he goes through life with a song on his lips. “As it happens, he sings to himself,” said mother Kristýna (33). Amálka herself revealed that she also sings in the choir. “And I also play the violin, but I don’t want to be a musician. I want to be a vet,” he is clear.

“We are no longer fighting the disease. In ten years of Amálča’s life, we already have quite a lot of experience. So if there is a threat of inflammation, we react to it in time,” stated Mrs. Kristýna and added: “We try to adapt the program to everything. It can be said that we are now trying to make friends with the disease.” Friendship plays a very important role in Amálca’s life.

“We have such a group of girls. We are four sleepover friends, as mom says. We go on various adventures together, and if possible, we always spend the night together at one of them.” Amálka revealed. “We are very lucky to have great people around us. We really appreciate that the neighborhood helps us,” added mom.

Siblings are healthy

“When we were expecting her, we had no idea about the disease. Only after Amálka was born did we find out that my husband and I were both carriers, and that we had a 25 percent chance of having such a child.” stated Kristýna Ježková, who gave birth to four completely healthy children after Amálka. “Of course, we’ve been honest about genetic testing for each of them since conception,” added.

He will run for help

Šumper firefighters are preparing a charity run for Amálka. Its goal is not to collect money for the family, but to finance research and treatment of rare diseases, thus improving the quality of life of many children.

“About a year ago, over coffee, we thought of organizing something that could help those in need,” revealed Nikola Hýblová (30), who devised the event with her husband, firefighter Jaroslav (31), and added: “That’s how the project Become a hero – run with IZS!. We were surprised that last year over a hundred people took part in the very first year.”

This year’s run will take place in Šumperk on August 31. The event will last from 9 a.m. to 6 p.m. More information can be found at www.behejsizs.cz.

Despite her serious illness, she is cheerful and very handy and smart.

Author: Pavel Ryšlink