Perm Charity Helps Woman With Rare Moyamoya Disease

The charity fund Dedmorozim («Father Frost» Foundation) has shared the story of 25-year-old Daria, who lives with the rare moyamoya disease. Because of it, she suffered two strokes while still in school. Daria dreamed of becoming a teacher, but treatment kept pulling her away from her studies. Even so, the Perm woman managed to fulfill her dream. This is how her life turned out.

Moyamoya is a rare chronic disease of the brain«s blood vessels in which arteries gradually narrow and become blocked. On scans, the tangled network of vessels looks like puffs of smoke. In Japanese, the condition was named exactly that — »billowing smoke,« or moyamoya.

The Dedmorozim fund told 59.RU that Daria lived in a small settlement in the Bolshesosnovsky District of the Perm region. She loves children and dreamed of building her career around raising them, just like her mother. But Daria was found to have moyamoya disease. It is so rare that there are no official statistics on it — only descriptions of isolated cases. Because of the illness, Daria suffered two strokes while still of school age.

«Moyamoya is a very unusual disease both for the doctors I see and for my loved ones,» Daria told the Dedmorozim fund. «I explain it as a hazy little cloud: I deal with frequent headaches, my vision darkens, or I see fog. Essentially, the signs of a pre-stroke state are always with me. Of course, that is frightening, but I try to keep myself together.»

During treatment in 2016, Daria«s thyroid gland became enlarged, and a doctor then advised her to turn to Dedmorozim. The fund opened a fundraiser and helped Daria: Perm residents raised a large sum, and the young woman completed two expensive courses of radioiodine therapy.

«I still remember this miracle,» Daria says. «Radiotherapy helped shrink my thyroid gland, and I was able to train as a teacher. I also gave birth to two wonderful girls and got married. I am not registered as disabled, yet moyamoya is always with me. But I hope only for the best.»

Daria«s older daughter is already six years old, while the younger one is just a year old. In her free time, the young woman draws, embroiders, and makes amulets. Daria is currently on maternity leave, but once her younger daughter grows up, she plans to return to work as a kindergarten teacher. She managed to work in the profession for four years during her student placements and another three months after her studies. Daria now lives in Votkinsk, but she remembers Perm and those who helped her.

«Thank you so much to everyone for your help,» Daria says, thanking Perm residents. «If only you knew how happy I am that I can simply smile and bring joy to my children.»

Earlier, we reported that the Perm-based Dedmorozim fund released its own merchandise to help children.