Woman with rare moyamoya disease defies odds

A 25-year-old woman named Darya from the town of Ploska in the Bolshesosnovsky district of Perm Region has a rare condition called moyamoya. The charity fund Dedmorozim (Father Frost) paid for her costly treatment, and she spoke to 59.RU about her life, her dream of becoming a teacher and how she became a mother. She loves children and says she has managed to fulfill her dream; we spoke to her about how the unusual disease manifests itself and how she managed to cope with it.

Darya Fokina was first diagnosed with moyamoya in 2016, when she was also assigned a disability group, she told 59.RU. She assumes the disease was inherited, but none of her close relatives have it.

Moyamoya is a rare vascular disease of the brain in which the arteries narrow, and on scans the vascular network resembles puffs of smoke. The name comes from Japanese: moyamoya means «puffs of smoke.»

The disease manifests itself in unusual ways: Darya compares it to a pre-stroke state. First a severe headache begins that painkillers cannot relieve, then her vision darkens and it becomes difficult to speak. She feels especially unwell in autumn and spring, when she needs injections or her condition deteriorates badly.

«In Moscow a doctor told me the statistics are small: there are only five people in the world with this diagnosis, and I am the fifth,» Darya said. «He also gave me a list of recommendations on what I can do and what is strictly forbidden. I follow these rules strictly. For example, I cannot blow up balloons or fly on airplanes.»

While Darya was in the Perm Regional Hospital with thyroid problems, a doctor advised her to turn to the Dedmorozim fund. The doctor had seen how volunteers helped people with diabetes by buying the devices they needed to make their lives easier, and she was sure Dedmorozim could help Darya too.

«When my mother and I were discharged from the hospital, we went straight to Dedmorozim,» Darya explained. «They raised a large sum for me in record time, for the first and second courses of radiotherapy. The first time the dose was very large, and the money raised was not enough, so they opened a new collection and Perm residents again raised the needed sum. The second course also required a lot of money, my family did not have that kind of money, and Dedmorozim helped us a great deal again.»

After the 9th grade, Darya moved to Votkinsk (Udmurtia) to live with relatives who could look after her and enrolled in a music and teaching college to train as a kindergarten teacher. Later she began a relationship, and in her third year, in 2020, she gave birth to her first child. Her second child was born in 2025, after she had finished her studies and worked for several months at a kindergarten.

«I gave birth in Izhevsk (Udmurtia). I am not allowed to push, so I had a caesarean section,» Darya explained. «I am completely forbidden to give birth on my own, as I cannot endure pain. The birth was difficult but without complications, and the children are healthy.»

Moyamoya is incurable. As a child Darya was not afraid, but now that she has children, it frightens her. Darya dreams of working at a kindergarten and says that after her maternity leave she will definitely return to the profession and will learn new things.

«I think I could work in a group with children with limited health abilities,» Darya suggests. «Helping such children realize themselves and, of course, teaching them.»

Darya thanks the Dedmorozim fund and all the caring people who donated money for her treatment and gave her the chance to live.

«I am very glad that I am alive,» Darya says. «I can see the sun, raise my children, and give something to other children who will also become dear to me. Let as many people as possible learn this story, let them take care of themselves and believe in the impossible.»

We previously told the story of Syuzanna, with whom the Dedmorozim fund began.