UARU
Raising A Child With An "Unregistered Disease" In Ukraine
21 June, 2017
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When Mykyta Chibizov was born it was clear something was wrong. As a baby, he would cry all the time. For a long time, Ukrainian doctors didn't know what was wrong. They even encouraged his parents, Kateryna and Kostyantyn, to give him up. For them, this wasn't an option. In 2015, German doctors finally diagnosed Mykyta with a disease so uncommon it affects only one in a million boys.

Hromadske spent the day with Mykyta and his family to find out what life is like dealing with this extremely rare condition and raising a disabled child in Ukraine, where healthcare service is one of the poorest on the continent.

“Mykyta doesn’t know how to do anything by himself, he needs around-the-clock care. He doesn’t speak, he can't sit up without support, he can't stand or walk. He doesn’t ask for food or drink. It is challenging for us because we have to be very disciplined. We do everything according to a schedule. Our daughters, Veronika and Violetta, help as well. Together with my husband, we are one team, we support each other,” Kateryna said.

At one year and three months, Mykyta was diagnosed with cerebral palsy, but the doctors were not sure of the diagnosis. The family lived with this diagnosis for the next ten years, but the thought that it could be something else never left them.

Doctors at a German clinic for rare genetic diseases analysed Mykyta’s existing symptoms and made their own diagnosis: multiple congenital anomalies-hypotonia-seizures syndrome. This disease only occurs in one in a million boys.

This disease is also not registered in Ukraine, therefore Mykyta is not listed as a patient with a rare disease.

“If statistics say that the chances of this diagnosis are one in a million, that means there should be an average of 20 children in Ukraine with the same diagnosis (according to the State Statistics Service of Ukraine’s data for 2016, there are 19.7 million males in Ukraine, not including Crimea –ed.). If there are more people out there who haven’t been registered, it means they haven’t been examined,” Kateryna pointed out.

According to Mykyta's parents, from the moment of their son’s birth, they have not received support from doctors: “The families that choose not to abandon their sick children usually end up dealing with the problem alone. The whole system is broken. When Kateryna went to the doctors for help, they said: 'You need to leave, give your baby to an orphanage and start a new life.' This was unacceptable for us. We couldn’t find any information on how to survive this. We weren’t prepared for the birth of a sick child,” Kostyantyn told Hromadske.

“I think the doctors that advised us to give the baby away were probably worrying about us as parents. They knew that it would be hard for is, and they were right. But, they didn’t see Mykyta as a person with both difficulties and joys, this is our child who has the right to his parents’ love. The situation brought us together,” Kateryna said.

Despite Mykyta’s rare condition and the uncertainty this unique diagnosis brings, the family remain united, thankful and proud.

“He is a boy that doesn’t cry. He has a very high pain threshold. We use Mykyta as an example for the girls in terms of patience and endurance. We don’t live our lives for the sake of our child but with him. He has taught us so much,” Kostyantyn said.