October 28 was a special day for the family of little Lenya Yamkovsky from Astrakhan - the parents of the boy diagnosed with SMA closed fundraising for the drug Zolgensma, which could save Lena's life.
To buy the medicine, the family needed to raise over 166 million rubles.
“I can't even believe that everything worked out.
We learned that the gathering was closed on October 28.
My husband was at work, I called him, the first reaction, of course, was tears.
A miracle finally happened, '' Leni's mother, Julia, told RT.
- Now that the collection is closed, Lyonya will be able to receive the drug in the very near future.
On average, three to four weeks are allotted for paperwork.
During this period, all organizational issues must be resolved, the drug will be imported. "
© Photo from personal archive
Lenya's parents learned about a rare disease when the baby was not even a year old.
They noticed the first alarming symptoms at the age of six months - the boy became lethargic, lost almost all skills.
Soon, doctors made a terrible diagnosis - type I SMA.
This congenital disease leads to a gradual failure of all muscles, over time, children stop moving and lose the ability to breathe.
From the end of January 2020, the Yamkovsky family began to look for funds for the most expensive drug in the world - Zolgensmu.
Just one injection of this drug can stop the development of the disease forever.
Until the drug is registered in Russia, and you cannot get it for free.
But the problem also lies in the fact that the drug needs to be administered before the child with a diagnosis of SMA is two years old.
Now the boy is 1 year 9 months old.
Now that the funds have been found, Zolgensma will be ordered in the United States and delivered to Russia.
Lenya, according to his mother, will undergo an additional examination in Moscow, after which he will be given an injection.
Then the child will start undergoing a rehabilitation course.
© Photo from personal archive
Letter to businessmen
According to Yulia Yamkovskaya, the fund of businessman Alisher Usmanov helped to close the fundraising for her family.
A week earlier, RT sent him and other major Russian entrepreneurs from the Forbes list a letter with a call to save Lenya.
Dozens of Russian celebrities, journalists and public figures have signed up to this request.
Actress and TV presenter Alena Khmelnitskaya, who has called for help for the family since July 2020, told RT that she met Lenya and his parents when the boy was brought to Moscow for examination - at that time the Yamkovskys were already raising funds for treatment, but had only 6% of the total amount ...
Khmelnitskaya turned to her friends and colleagues with a request to spread information about the family.
“We began to involve our colleagues in this story, asking the stars and famous bloggers to support the family and tell about Lena.
We were sure that in our country there are many caring, kind people who are ready to share, it was only necessary to convey information to them.
Margarita Simonyan suggested writing letters to be signed by those famous people with whom we were able to work at that time.
It was decided to send these letters to serious Russian businessmen, representatives of big business - we thought that someone might respond.
The amount was so huge that even a wealthy family could not get that kind of money on their own, "Khmelnitskaya told RT.
She added that after Lenya's story went public, and a story about a boy with a terrible diagnosis was released on central television, fundraising accelerated dramatically - in just one day, more than 45 million rubles were transferred to the Yamkovskys' account.
But the family still had to raise about half of the total.
At that moment, representatives of the Alisher Usmanov Foundation contacted Khmelnitskaya, who volunteered to help the baby.
“Apparently, they learned about the boy from our letter, asked how much money was left to raise.
Many thanks to Alisher Burkhanovich who volunteered to close the account.
Thanks to this, we finally heard the cherished words “the collection is closed,” the RT interlocutor rejoices.
Help other children
Khmelnitskaya added that it is now important to help other children with spinal muscular atrophy who need expensive drugs.
She also recalled that from January 1, 2021, the state promised to additionally finance the treatment of children with 19 orphan and 29 life-threatening diseases - Deputy Prime Minister Tatyana Golikova said the day before.
“Today, of course, we are extremely happy for Lyonya and his family, but we understand that it is no longer possible to quit, this work must be continued,” Khmelnitskaya stressed.
- Yesterday it was announced that the state will additionally support children with severe orphan diseases.
But it will take time for children to start receiving such help, and many need to get medicine now.
Therefore, we want to try to found such a movement so that our stars talk about children with SMA, provide information support. "
The interlocutor of RT also thanked the Geography of Kindness charitable foundation, which provides targeted assistance to children with serious illnesses, including SMA.
According to Khmelnitskaya, thanks to the efforts of this fund, it was possible to fix the cost of drugs in such a way that it did not depend on the dollar exchange rate - now the Zolgensma injection costs 150 million 343 thousand rubles.
“For comparison: when we collected funds for medicine for Leni, the amount was more - more than 166 million rubles.
This value was indicated on the invoice.
Geography of Kindness has also managed to ensure that children who are to receive an injection do not need to travel to the United States.
Now the drug is simply ordered to Russia and introduced here, ”Khmelnitskaya explained.
RT thanks everyone who supported Lenya Yamkovsky's family and helped raise the amount necessary for treatment.