Europe

Teenager with rare disability flourishes in new home

Lyosha in park Image copyright Pavel Volkov

Swimming, dancing and school assignments: Lyosha Shayev could be any typical teenager, were it not for his very rare genetic condition, ablepharon macrostomia.

His life has improved since a Russian mother adopted him. The 14-year-old, who grew up in orphanages, has adjusted well, enjoying the company of his new brothers and sisters.

Lyosha with Nadezhda Image copyright Pavel Volkov

I got to know them about a year ago, and have visited them a few times.

Nadezhda Yarikhmetova adopted Lyosha when he was 12, after seeing his photo, published by a charity. She has biological as well as adopted children.

Lyosha swimming Image copyright Pavel Volkov
Lyosha celebrating birthday Image copyright Pavel Volkov

His adoptive parents are looking after his development needs, helping him to catch up with other children, with the kind of attention that he lacked at the orphanages.

His birth mother had given him up for adoption as a baby.

Lyosha reading Image copyright Pavel Volkov

He now knows the alphabet and can read. His disability left him with physical abnormalities and a speech impairment, but he knows sign language and tries to talk.

He has had several operations to improve his quality of life.

Lyosha with Nadezhda Image copyright Pavel Volkov
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Lyosha in profile Image copyright Pavel Volkov

The family is a whole new world to him.

Nadezhda says it was a tough decision to adopt him and she gave it a lot of thought. Nobody could predict how Lyosha would behave in the family, how he would get on with the other children.

Those relationships have turned out well: he shows affection, especially for his younger siblings. He has learnt to do massages, besides his other pastimes.

Lyosha doing head massage Image copyright Pavel Volkov
Lyosha with flowers Image copyright Pavel Volkov

All images subject to copyright. This story was first published by BBC Russian. Pavel Volkov studied photography in St Petersburg and now lives in Moscow. His work focuses on people with disabilities, subcultures and army life. See more on Instagram: @pavelvolkovphoto

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