An injection worth more than 65 million hryvnias: little Maksimko from SMA needs help
Little Maksim from SMA needs help/Photo by Petr Kirik
In such a difficult time for Ukraine, Maxim Kirik from the Lviv region was diagnosed with a rare genetic disease – spinal muscular atrophy. To live a full life, the boy needs the most expensive injection in the world, the cost of which is more than 2 million dollars.
Maxim's parents Petr and Irina Kirik told about Maxim's illness. They appeal to all those who are not indifferent with a request to help.
The boy was diagnosed with spinal muscular atrophy (SMA) – a disease that, without a saving injection of Zolgensma, which costs more than 2 million dollars (more than 65 million hryvnias), very quickly leads to the loss of the ability to move first, and then to breathe.
In order for Maxim to fully live and develop, he needs to get this injection as soon as possible. There is not much time left, because the child will turn 2 on May 28.
Help save Maksim Kirik's life/Collage by Tatyana TsarukThe boy developed well, pediatricians did not see any deviations. But when Maxim was 1 year old, he did not start walking.
We sounded the alarm, went to the doctors. They all shrugged and said that he would go, – says the father of the child.
This was followed by many different examinations, including MRI. But checks did not reveal anything wrong. Maxim began to go to rehabilitation under the direction of a doctor. And after each course, his parents hoped that he would start walking on his own, and everything would be fine. Rehabilitation courses, of course, gave results, but not what we would like.
And then it was February 24 – a full-scale invasion of Russia into the country. The family immediately decided to go to Poland – to further undergo a rehabilitation course for both the boy and his father Piotr (the husband is recovering from a terrible accident he got into a year ago).
A terrible diagnosis
< p>Already in Poland, the family went to the consultation of a local neurologist. There it was proposed to take a test for SMA.
And on April 4, 2022, we found out that our son Maxim has this disease. Therefore, he cannot walk well and in general can lose this skill at any time, – the parents shared.
Maximka Kirik from Lviv region was diagnosed with SMA/Photo by Petr Kirik
What is SMA
Patients lack the SMN1 gene, which encodes the SMN protein required for the functioning of motor neurons. With the disease, the motor neurons of the spinal cord gradually die, which leads to the death of neural connections with muscles and muscle atrophy – a complete stop of muscle activity over time. This is a gradual but irreversible process, which means the loss of the ability to move, and eventually breathe. The injection of Zolgensma makes it possible to “repair” the broken gene.
Peter and Irina are very scared to realize the new reality. However, they continue to fight for the life of their son – then they go through an intensive rehabilitation course so as not to lose what they have already achieved.
Maxim really wants to live – it’s hard for him, but he tries raise legs, take steps, he smiles. But it is very difficult for a boy to keep his balance.
A lot of money is needed, but time is short – only a few months. In addition, the country is at war. The father of a child in Poland collects with other caring people help for the armed forces of Ukraine, he fully understands the priorities of Ukrainians. But now the most important thing in the whole world for a young family is to have time to save their son.
The disease cannot be asked to come a little later, because now is not the time. But there is no time to work miracles. Whatever it is, every day is ideal for mercy.
How to help Maksimka
Privatbank: 4149499387381823 – Kirik Petr (father)
< p>Monobank: 5375414100914612 – Kirik Petr (father)
4441114457484473 RU073220010000026209327602697 Kirik Roman (uncle) TIN 3457005297< /p>
Euro 5375419909067256 RU973220010000026200327624760 Roman Kirik (uncle)
Dollars 5375418812782654 UA633220010000026200327654 UA63322001000002620032762854 UA6332200100000262003276285 Pay Pal[email protected]