“May we risk, but we want to take this chance”
The Urals parents of a terminally ill girl wrote a letter to Donald Trump
The parents of one-year-old Lisa Krajinou of Zarechny, which is necessary to treat the most expensive medicine in the world, wrote a letter to the President of the United States Donald Trump asking him to save their child. The appeal says that on 23 January, their daughter was diagnosed with “spinal muscular atrophy of the first type” (personal data of the child and the diagnosis are published Znak.com with written parental permission). “It is a genetic disease in which gradual atrophy of the muscles while retaining full consciousness in man, and in Russia there is no treatment for this disease” — explain in the letter the parents of Elizabeth.
They further mention that the American hospital Boston Children’s Hospital provides treatment of the disease using the latest drug Zolgensma, which “makes replacement of a broken chain gene,” and the child begins to develop. The drug is worth 2.1 million dollars, another 500 thousand dollars to treat and postoperative observation. This medication is considered the most expensive in the world.
“Now Lisa 1 year and 4 months. She turned over on her stomach, holds her head, sits, write the parents of a little girl. — Says “Mama”, “Papa”, “Baba””. The letter emphasizes that in Russia “the child is doomed to death” and the family never earn the right drug.
“Mr. trump, we are in despair, please save our Lisa” — these words ends with the letter Alexei and Alena Kruchenykh.
In an interview with Znak.com Alex krajukhin admitted that the letter to Trump, “is the cry of the soul” and the last hope, as in Russia, there are ways to treat these children. Despite the fact that their example is not the only even in the Sverdlovsk region. Last week the region was declared a collection of 160 million roubles for five-month-old Ani Novozhilova, which also needs to be drug Zolgensma.
“In the end, once we have such a serious situation in the country, then let’s do something to solve it! And since in our country it does not solve, then maybe in USA we will respond? See, now we even to the President of Zimbabwe to ask for help. Nothing illegal from our side, I think not, and time we have very few left. If to two years we will manage to find the drug, then, consider yourself saved. Then it will be too late,” said Krayukhin.
provided by Alexios Kruchinin
He also said that the drug Zolgensma passed the necessary certification in the United States in may 2019 and in Russia it is not even recognized. “May we risk, but we want to make this drug and use this chance”, — said the father of a terminally ill girl.
At the moment the diagnosis “spinal muscular atrophy” in the Sverdlovsk region, the doctors gave 16 children. To buy the necessary medicine, we need about 2.5 billion rubles. For the above-mentioned Anna Novozhilova for the week managed to collect about 32.5 million rubles. It’s not enough to save the child.
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