Foundation “Dobrodel” announced a fundraiser for eight-month-old Zarina Badoeva. The girl has a rare genetic disorder — spinal muscular atrophy. To save the child urgently needs expensive therapy. But to gather a huge amount of the family can not afford.
Little Zarina long-awaited child in the family. Ten years parents were waiting for the firstborn, made several ECO. And, it seemed, out of the woods. But after the birth of the baby a new challenge: doctors diagnosed “spinal muscular atrophy”.
“She never learned to roll over, no longer hold the head, lying on his stomach. Not a village and not trying to sit down. The legs stopped moving. And what scares me the most, she eats worse”, — says Liubov Popova, mother Zarina.
the Disease is severe, and in most cases these children do not live up to two years. Muscles gradually atrophy from the first days of life. In the end, the child ceases to breathe independently.
“the Incidence is about one case per 11 thousand newborns. Jizneopisaniyami this is a progressive disease that leads to complete dependence on relatives caring for a patient,” explains Oksana Litvinova neurologist.
now the little girl’s room is more reminiscent of a hospital ward — expensive equipment is necessary to sustain life. The cure for this disease is. It was in Russia and put the family under the law.
“it was shown the drug “Spinoza” as the only drug that is registered on the territory of the Russian Federation. The clinic sent a personalized application to the Department for the purchase of Zarina this medication,” says Zaurbek Badoev, father of Zarina.
One shot costs about 8 million rubles. These need a few a year throughout their life. This will prevent the disease from spreading. But the city provided the girl needed drugsom, it takes time that Zarina is not much.
However, there is a American drug that, according to doctors, able to completely stop the disease. It cost nearly 2.5 million dollars — an amount unaffordable for the family.
“Let’s help this family. It’s easy. If everyone at least $ 100 will send, we will collect this amount as soon as possible,” urges Inna Trifonov, the General Director of the charity Fund “Dobrodel”.
to help Zarine, a relatively short SMS to the number 7715 with the word “contribution” and the amount you want to donate. Our daughter is 8 months and the sooner you start treatment, the more chances it will have for a full life.
“my biggest dream is as soon as possible to therapy. As soon as possible. We all doctors say therapy is needed yesterday. We cannot lose a day,” appeals to all concerned Liubov Popova, mother Zarina.
Text: “to Conduct-Moscow”