Residents raised money for the most expensive medicine in the world for a small Siberian with SM

Parents of the six -month Sofia Darbinyan were able to collect the necessary amount for buying the most expensive medicine in the world for a girl. She suffers from spinal muscle atrophy (SMA).

“Today, with tears of joy in our eyes, we inform you that our collection is closed,” wrote Sofia's mother Anastasia Darbinyan on Instagram, “it was the most kind on the world on our family. Hands shake, tears flow! But these are tears of happiness! "

The collection lasted 83 days. Money will go to the purchase of Zulgensma, which is considered the most expensive medicine in the world. It is able to remove the genetic cause of SMA and is introduced only once in a lifetime.

Zulgensma will cost 150 million rubles, said to the taiga.info Anastasia Darbinyan. At the same time, on the morning of September 4, 43.61 million rubles were collected - the collection closed one transfer.

“I am writing these words, but I still can’t believe it! It's just a miracle! A miracle for our little girl, ”said Anastasia Darbinyan. - Thanks to our most important wizard who closed us to the gathering. We will remember you all our lives! <...> Thanks to everyone who helped, supported ideas, a kind word, ruble, repost or comment! ”

Spinal-muscular atrophy is a genetic disease that affects the motor neurons of the spinal cord. Creeps are most often sick. Over time, such patients stop breathing and swallowing, and to one degree or another, mobility to one degree or another, their limbs cease to bend, the skeleton is deformed.

Taiga.info told the story of Sofia in detail. She does not hold her head, hardly turns over and almost does not move her legs. Her parents also opened a fee for the drug "Zulgensma". This is the most expensive medicine in the world. It is able to remove the genetic cause of SMA and is introduced only once in a lifetime. According to the Pravmir, Zulgensma publication is much more effective than Spinraz, for children with the first type of disease from one to four months. Most patients after injection no longer need ventilation of the lungs, half of them begin to sit without support. Some even begin to move independently.

The Central District Court of Novosibirsk ordered the regional Ministry of Health to give the girl the drug. A lawyer of the ministry did not support the position of the parents of the child. At the trial, the representative of the plaintiff, the director of the SMA Help Foundation, Alexander Kurmyshkin, said that Sofia needs four doses of Spinraza.

The Ministry of Health of the Novosibirsk Region announced the purchase of Spinraz for Sofia, Taiga.info wrote . But her parents acquired two doses of medicine at the expense of philanthropists in order not to miss the time.

Spinraz is the first registered drug for SMA in Russia. According to the mother of the girl Anastasia Darbinyan, his Sofia was recommended by the federal consultation of doctors from the Moscow Nicky of Pediatrics. Veltishchev, the family also has the conclusion of the regional medical commission, a response from the Ministry of Health of the Russian Federation, which states that "the issue of ensuring the medicine is transmitted to the regional Ministry of Health."