In Photos: What it's Like Living With Ablepharon-Macrostomia Syndrome

Ablepharon-macrostomia syndrome (AMS) is one of the rarest genetic disorders on Earth. It’s characterised by various physical deformities, including the underdevelopment or absence of eyelids and an abnormally wide mouth—and while development of motor skills remains largely unaffected, children affected by the disorder often suffer from stunted intellectual growth and speech impediments.

Alexey Shaev, or “Lesha” for short, lives with AMS in Russia. Lesha was abandoned as a child and placed into the care of an orphanage, then adopted a few years later. After his foster parents helped fund several corrective operations, Lesha started attending a special primary school where he took up swimming and dancing.

Russian photojournalist Pavel Volkov was able to capture a snapshot of Lesha’s life; a pictorial lesson in surmounting life’s challenges and dealing with the hand you’ve been dealt.

We spoke to Pavel about his work and his inspiration behind documenting Lesha’s journey.

VICE: Hey Pavel, why did you decide to document this story?
Pavel Volkov: I have been working on a few similar stories in recent years. It all started with a project on paralympians—I wanted to show their individual moments of triumph over their personal difficulties. Then after the paralympians, I started working on stories about people with other ailments who don’t compete in sports. However, the meaning remains the same: everyone has the right to life, regardless of disease or injury, regardless of whether it’s congenital or acquired.

Tell me about Lesha. What’s he like?
If you don’t take Alexei’s appearance into account, he’s a normal child inside. He has mental retardation, but this stemmed from his time in the nursing home rather than from his condition. When Alexei grew up there, no one was engaged in his development. He now attends a special school that helps him in mental development and his overall lag in development is now estimated to be about three to four years. He cannot speak, although he understands ordinary speech. He is only able to make sounds similar to simple, short words. He mainly explains himself using simple gestures and sign language, which his family understands.

Is he happy?
Lesha understands that in some respects he is not like everyone else, but he accepts himself as he is. And the most important thing in this story is how his new family has accepted him just as he is.

Lesha seems pretty active and outgoing in your photos. What is life like for him on a daily basis?
It’s true, he is. Lesha is a sociable and active guy—perhaps he’s trying to catch up on all the things he missed while in the nursing home. He has swimming lessons at least once a week, which has given him great improvements in his musculoskeletal support, and as I mentioned he also has lessons in a special primary school once or twice a week. They’re held by teachers who are familiar with his condition.

On weekends in the summer, Lesha usually spends time outdoors with his family. I went with Lesha and part of his family to a large park located near their home. I noticed Lesha spends a lot of time communicating with his brothers and sisters, whether it is playing with them or helping them with problems. Honestly, I would say his favourite activity is simply communication, both with adults and younger children in his family.

Your photos generally depict Lesha’s family as loving and welcoming. Are all members of Lesha’s community this accepting?
All members of Lesha’s family understand that he is special. They behave a little differently than with an ordinary child. I haven’t heard any stories about Lesha being bullied. And while passers-by pay close attention to him, I didn’t notice any negative or unsympathetic reactions from them.

What was the process of getting to know Lesha and his family like?
About a year ago, I wrote to Alexei’s foster mother, Nadezhda, who agreed to meet with me. After we met, she introduced me to Alexei. I began to visit them and take photos, went for walks with them, and visited the various centres where Alexei goes for his classes. In the beginning I couldn’t tell from Lesha’s reactions if he liked me or not. But at our last meeting he was really happy, and even hugged me.

Does Russia have a public healthcare net to support Lesha and his family?For a very long time, a charitable foundation has helped out with Alexei’s medical fees; they helped pay for some surgeries and medical treatment abroad. Some of Lesha’s physical deformities were corrected by plastic surgery, such as removal of his eyelids.

Curators from the foundation also continue to monitor Alexei and sometimes visit him. In fact, right now Lesha lives with his family, but friends from charity foundations sometimes meet him. The foundation that helped him a lot is called "Refused": it helps children who were refused by their parents.

What did you hope to express through documenting Lesha’s story?
I wanted to show that family is incredibly important. Everyone is different from each other from birth. Obviously, some children need to have a family even more so than others—as we see in the case of Alexei.

Without a family, Alexei couldn’t have survived alone in this world. It doesn’t matter how you look; we all have a right to life and to have a family.

Interview by Eddy Lim

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