The family of the girl with the AGR from Kaliningrad collected 162 million rubles for the cure
Parents Milana Semenkovo from Kaliningrad, which is a rare genetic disorder - spinal muscular atrophy - managed to collect 162 million rubles for the purchase of one of the most expensive drugs in the world Zolgensma.
When the AGR is gradually lost motor function the child may stop moving or even breathing. The only cure for patients with SMA is registered in Russia, — "Spinoza", the injection must be done throughout the life time of four months as maintenance therapy. The effect will be lost if you miss even one shot.
There is also foreign, not registered in Russia drug Zolgensma, which cost about $ 2 million. It will take only one injection, but up to the moment when the child turns two years. The girl's parents with the help of volunteers and caring people have started collecting for this drug in the fall. The collection joined the famous actors, musicians, athletes, who through their pages in social networks called to help the family.
"The collection is closed. I want to say thank you. I spent all morning crying, I keep calling, all very moved. It is the victory of our friends, volunteers, subscribers, caring people. This is a truly national collection. At anybody such was not. In these stories there are the sponsors who covered the collection of large sums of money. We were given a very difficult. There were a lot of experiences. Each kowtow. We love you very much and I am really grateful to everyone", - said the girl's mother Victoria kaszuba on Milana's page in Instagram.
She said that now they need to collect documents and to obtain permission from the doctors to the introduction of Zolgensma. This girl recently turned one year and nine months, continue to do the injection support of the drug "Spinoza", for which she purchased the regional government.