The State Of Mothers

Snezhana and Pasha: Pasha has a rare disorder which will cost him his ability to walk, talk, and finally to breathe. The metabolic disorder is called mucopolysaccharidosis and there are only 2,000 people suffering from the disease around the world.
 
 

There is one medicine available but the price of treatment is $440,000 for one year. Snezhana helped found an organization called Hunter Syndrome (after the name of one of the disease subtypes), which advocates for mothers who require the treatment. 
 

Snezhana travels throughout Russia to represent mothers in court, reminding the Russian state of its obligation to help fund treatment for the rare disorder.

But life with a disabled child is not only about treatment and advocacy.
 

Snezhana often throws small parties for her son and other children. 

Yuliya and Dana: Dana suffers from cerebral palsy. It’s not a rare disorder in Russia, yet for Yuliya it was impossible to find suitable treatment for her daughter in her home town of Stavropol. 

Yuliya travelled to Israel and Montenegro seeking help from medical experts, before eventually setting up her own rehabilitation center in Moscow, called Take a Step. 
 

Yuliya photographed on her birthday. 

Yuliya teaching a young boy to hold a spoon. As well as providing care and raising money for children suffering from cerebral palsy, Yuliya trained as a speech therapist to better care for her daughter and other children affected by the disease. 

Yekaterina and Plato: When Plato was diagnosed with autism there were no kindergartens or schools to cater to his needs. Yekaterina studied the teaching methods used in the United States and started her own education center in Moscow designed for autistic children.
 
 

Autism is not a disease. The main treatment is tailored care and education, but mother and son will never be able to understand each other fully.
 

 

Plato is more interested in studying the carousel than riding it.

Autistic kids aren’t team players, Yekaterina says, and school life can be hard for them. Every child at Yekaterina’s center has an assistant who reassures and supports them.

No one fully understands how Plato sees the world, but thanks to Yekaterina’s efforts, some autistic Russian children now have access to an environment which is sympathetic to their needs. 

Elena and Olya: Olya had her first fracture on the day she was born, then broke another bone the next day. She suffers from osteogenesis imperfecta, a disorder which leaves bones extremely fragile.

Elena founded a charity organization called Fragile People, which helps people affected by the disorder to source medicines difficult to access in Russia.

Elena also organizes therapy sessions for sufferers of the disorder. A gentle form of yoga is possible but only if the instructor knows exactly the limits of her students. Elena knows. For the full version of this picture story (in Russian) click here.