"Matvey can already sit"

Americans know how to save children. Including our

In January, the New Gazeta told the stories of the one -year -old Timur Dmitrienko and the four -month -old Ani Novozhilova - Russian children suffering from a rare disease - spinal muscle atrophy (SMA). The disease is how rare, so terrible: the patient gradually atrophy atrophy - first legs, then arms, then the rest of the body stop moving. The last muscles that are responsible for swallowing and breathing cease to work.

The only medicine can defeat the SMA today - Zolgensma. It is the most expensive in the world - $ 2.1 million per injection.

Little Matvey Chepushtanov from Rubtsovsk (Altai Territory) has already made the necessary injection. The New Gazeta contacted his dad, Roman Chepushtanov. He told how the treatment is taking place and what his first results are.

“Matvey was diagnosed in 9 months, in February 2019,” says Roman. - At that time, there was only one medicine in the world that could stop this disease, - Spinraza. In Russia, it was in the process of registration, and the Ministry of Health sent us to the Israeli Schneider clinic, saying that the first 6 injections would be made at the expense of the budget. ”

The peculiarity of the drug Spinraza - really the first that helps in the fight against SMA - is that it must be taken constantly: six injections in the first year and three injections - in the following.

All life.

“We managed to make four injections, after which it became known that the United States officially registered Zolgensma. One injection is enough, then - only rehabilitation. We decided that Matvey needed this drug, and we were lucky: there was a philanthropist who gave money. I didn’t even have to collect the collection, ”the boy’s father shared.

Zolgensma’s injection Matvey Chepushtanov agreed to make at Children's Hospital of Philadelphia - the oldest children's hospital in North America. 28,000 children annually receive treatment from oncology, orphan diseases, severe heart disease and respiratory tract.

And Matvey was among them.

“We rented housing and flew to Philadelphia on November 9. On the third day after the arrival, they came to an initial inspection at the clinic. The doctor already understood what the diagnosis we have - we translated all medical documents in advance into English. There were no repeated genetic tests. Doctors took blood, urine tests and re -analysis of antibodies. They made vaccines from influenza, measles, rubella, ”Roman continues.

Treatment, says Chepushtanov Sr., is carried out on an outpatient basis-it is not necessary to go to the hospital:

“The injection itself was made to us on November 27 last year - that is, two weeks after the initial inspection. Before that, the Matvey body needed to recover after vaccination. The procedure itself is a dropper: piercing a vein and slowly administer the drug - six milligrams. The child at this time is not under anesthesia, on the arms of mom or dad. The whole procedure takes three hours. ”

After the procedure, the Chepushtnovs were immediately released home, assigning a weekly inspection for side effects.

“The body begins to fight the drug, and if the child has too much immunity, it can level the effect of the drug. Therefore, immunity is weakened with the help of steroids, ”Roman explains. He claims that after the injection of Zolgensma, Matvey is really strong.

“He never sat before.

It was like this: you plant him - and he immediately falls. It was so weak.

Now Matvey can already sit, it happens for two, three minutes sitting. So far, of course, this is still a child with weak muscles. But the dynamics are positive, ”says Roman.

After the injection, American doctors recommended that Chepushtanov be observed in the Philadelphia clinic for three more months.

“They said: you can go home even now, but then in Russia you need a doctor who will contact us will take tests from you, pass them on to us, and with which we can continue treatment,” said the father.

The Chepistanovs decided to stay in Philadelphia so far.

To undergo rehabilitation (this is a course of physiotherapy exercises) for the Matvey family turned out to be expensive-27,000 rubles for one 40-minute lesson. But they do all the exercises at home, even brought a vibration platform with them. In Rubtsovsk we have already agreed on classes with a physiotherapist and a visit to a specialized pool. They are going to return home in a month.

Now the Chepustanov family begins to live like everyone else:

Parents just walk, play with children, watch how little Matvey is strongly strongly.

I would like to believe that soon their child recovers and grows stronger, the parents of Timur Dmitrienko from the Moscow Region and Ani Novozhilova from Yekaterinburg will be. And thousands of parents of other babies with a diagnosis of SMA.

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If you think that Russian children with orphan diseases should receive medicines unconditionally - without collecting donations, without participating in marathons with a collection of money, do not depend on the number of SMS and media publications written in their support - sign a petition to fix their right to treat budget funds in the Russian Constitution - that is, at the expense of state expense.

The country has nothing more important than their children.