Hi! My name is Sasha Arhipov! I was born on June 4th, 2018 and I really need your help! My
parents do their best to stop the progress of my illness, which takes away my strength… I try to do
my best to help them, but the time is working against us. I believe that with your help we will make
it! Thank you!
We are Roman and Ekatherina Arhipov. Sasha Arhipov is our only son. We got married 2 years
ago. We are believers, so we got married in church. We are both from big families and wanted so
much to have kids… and both have turned out to be the carriers of the gene which is responsible for
the SMA of our baby. It is a slow atrophy of all the body till the point when the child is unable to
swallow, and than to breath. The child cannot turn, sit down, get up indipendently. He is dying in
front of us and is conscious of the process, because his brain is working just as any healthy kid’s
would. He understands and is scared.. As if he feels the ticking of the clock – baby, your time is
running out.. The hell was brought about by the genetics and the local and the state healthcare
service. To make you understand we shall tell our story.
At first, the wrong calculation of the pregnancy stage and, as result, the urgent C-section. The
doctors would not bring the baby for a couple of days, than they have suspected the meningitis and
he was sent to another city, Tula, for a check-up. Thanks God, he went on with the breastfeeding
and till the age of two my wife, Ekaterina, has breastfed him so the reflex of swallowing would be
regular. Sasha was developing according to his age – he would turn in his crib, smiled, held his
head.. and than suddenly he was getting weaker. During the first visit to the neuropathologist, the
doctor has suggested that our son was not holding his head .. as a part of normal reaction to the
vaccination. No comment. It is a deliberately lost time. We turned to a local children hospital where
the neuropathologist has suggested to check in for some check-up. We, of course, have accepted!
My wife and Sasha were put intp the intensive care ward instead of the neuropathology wing
because they have confused and have lost us. As a result, Sasha has caught bronchitis, which is
extremely dangerous for the kids affected with SMA as they have a difficulty of coughing and risk
suffocating. The doctors have remembered that the baby had to do MRI but during the bronchitis it
was impossible to put the child under the anasthesia which was necessary to carry out MRI.
At the end, we have been curing the bronchitis at home for 4 months. Only thanks to the manual
therapist we were able “to fight off” Sasha from the progressing illness. Finally, we got the
appointment in the city with the doctor, who has told us about SMA diagnosis for the first time. We
could not believe our eyes when reading over the internet about it. Till the last moment we hoped
that the diagnosis made was wrong. To be certain we have been to the genetic specialist in Moscow
and by some coincidence we got that appointment quite early. The result of the genetic tests came
by post on December 30th, 2019 My wife got frozen when she read – the tests confirmed that Sash
has SMA. The worst is when we have requested the due supporting therapy with Spinraza, the
doctors were very discouraging – no one believed that the local healthcare department would
acquire it for our baby’s treatment. We have started calling all the possible public departments but
were told that without the invalidity status we could not access the program with Spinraza
treatment. We understand clearly that the public healthcare will not always provide us with this
costly cure – one ampule costs around 125,000 USD and he needs 7 such ampules the first year of
treatment and 4 ampules every following year. Our region has acquired 4 ampules for Sasha till
now and he has received his last shot in August 2020, but no further news about the next shot as the
local healthcare does not have funds to buy other doses. The treatment should not stop in order to
maintain its benefits, but we are not able to pay these shots ourselves.
Than we have discovered Zolgensma which costs beyond any imagination – 2,125,000 USD or
160,000,000 Russian Rubles, but it is a one-time shot – it “breaks” the wrong gene and the body
starts producing the protein that prevents the atrophy of muscles.
We have started fundraising for Zolgensma – but first we had to get the bill from any American
clinic for this injection that in turn requires the explanatory letter from the local neuropathologist.
Since the local doctor does not speak or write in English, an American doctor from clinic would
contact him and explain in Russian how to fill in the necessary paperwork, while the translator
(provided at our own cost) will write the latter on his behalf to the American clinic. Such documents
would certify that this is our child with SMA, that’s it. The local doctor has refused saying that he
was not capable..
Another chance is the lottery that Novartis makes 100 times a year where the winner child gets the
shot free of charge. To take part in that lottery you still need the invoice from American clinic,
which in turn is impossible without the local doctor’s statement. The neuropathologists of our city
Efremov and from the city of Tula have refused to provide such statements saying that Zolgensma
is not registered in Russia yet. One of the local doctors have issued even the wrong statement saying
that our boy was a girl and so on.
Sasha needed the special wheelchair, tutors, vierticaliser to help him stand several hours a day, the
device that helps him cough and many other devices that the state healthcare should provide us free
of charge. For every single item we had to battle and even go to the Prosecutor’s office to get things
done. The Foundation of Social Insurance has added Sasha to the list of SMA affected, but we had
to solve the issue for each item necessary to us because it was supposed to be customized to Sasha.
All this process took from February 2020 till now and it is the 4th time that we prepare the
documents from scratch because Sasha was not prescribed the wheelchair and the device for his
legs. They cannot prescribe and give the other set. The special shoes were bought at our own cost.
Some kind people have gifted us with the special pillow. We have received the wheelchair and the
corset a couple of weeks ago, while the issue with parking and the disability platform for stars is
In order to get the appointment at the City Mayor’s office my wife had to do two single pickets in
front of the local Administration building. After the second picket the Mayor has received her and
promised to help spreading the information, but he could not offer any other help. Thanks to him
the national Fifth Channel has taken our interview and we have successfully raised 7 mln Rubles
(approx 100,000 USD). The Charity fund “Miloserdie” has taken Sasha for fundraising and their
team has given us all the support necessary till now.
According to the European protocol, Sasha has a chance to get the Zolgensma shot even after his
second birthday and we cannot loose this opportunity. Regardless of all these difficulties, we don’t
loose hope as there are so many kind people who support us. We have received the bill from
American clinic for 2,243,000 USD and we have raised already around 600,000 USD. Please, help
us raise the rest of the amount and save our little son!