thank you so much for visiting this page. It has been created to raise money to save my 10 months old son Zakhar, who has been diagnosed with spinal muscular atrophy (SMA) type 1.
He was born a healthy boy. Like most children of his age, he could lift his head and hold it up, he could roll over to his belly. But at the age of 5 months, he suddenly start losing his motor skills. At that point, I had no idea what it all could mean, so I started medical examination. The doctors told me that it might be SMA – a disease I knew nothing about back then. In mid-September, I received the results of a genetic test, which confirmed the doctors' suspicions – it was SMA.
SMA is a rare genetic disease. People suffering from SMA lack a certain gene responsible for creating a protein that is crucial for functioning of motor neurons. Without the protein, the neurons gradually decay, which leads to atrophy of most bodily muscles. Children with SMA type 1 are not expected to live long – most of them don't live past the age of 2. The most common cause of death is respiratory failure due to atrophy of respiratory muscles. In other words, the children lose the ability to breathe on their own.
It is hard to describe what I felt when I got the test results. But I knew that I would do whatever I could to try to save my son. Whatever I could to find the treatment.
The only treatment available in Russia – the country where Zakhar was born – is a recently developed drug called Spinraza (Nusinersen). Spinraza has proved to be effective: it can prevent death of motor neurons, so the children having received it can do many things that they wouldn't be able to do without the treatment, such as holding their head up, sitting, and even walking. But it is a very expensive drug – approximately 100 000 euro per injection, with 6 injections to be made during the first year of the treatment and 3 injections each of the following years. There is more or less reliable information that the Russian healthcare system will be covering Spinraza treatment starting next year.
But there are no guarantees, and I fear that the process might take much longer. And in the case of SMA, it is really important to start treatment as early as possible. Zakhar may not have much time left until his motor skills are lost irreversibly. He has already almost stopped moving his legs and arms. This February, Zakhar turns 1 year old – the age at which Spinraza may no longer be as effective.
We have no time to lose. By this point, we've managed to collect 70 000 euro, but that's not enough. To save Zakhar, we need money for the first 4 injections – approximately 400 000 euro. The injections have to be made in the course of a very short period of time. When a child receives the first injection, the fourth is to be made within 1.5 month or so. If it is not made, the whole therapy loses its effectiveness. We hope that around the time Zakhar has received the first 4 injections, Spinrasa will be covered by the healthcare.
It an enormous amount of money, but I believe that together we can raise it. I believe there are many people around the world who would be willing to help save my son Zakhar. I kindly ask you to share this information any way you can so that this message could reach these people. I would be grateful for any help.
With sincere thanks,
Zakhar's mum Olga
I am a friend of Zakhar's mum – Svetlana Rotar. I live in Belrin, Germany, and I will be transferring all the money we collect here to her Russian bank account. If you want to reach Olga directly, you can do it via email and phone:
email: firstname.lastname@example.org, email@example.com
phone: +7910 001 83 00
She also has created groups in Facebook and Instagram, which are partially being translated into English. There you can find updates about Zakhar's health and other relevant information:
Please note that Gofundme cannot process donations coming from certain countries. If you happen to be donating from one of those, you may try to use Olga's PayPal: paypal.me/Katkovzahar