Ruslan Sherbakov, born in 01.06.2010
Diagnosis: SMA I - Werdnig-Hoffmann disease, tracheostomy carrier, gastrostomy carrier.
Ruslan Shcherbakov's treatment news
ATTENTION! AS OF 04/02/2022: Fundraising closed! Ruslan and his parents evacuated to Germany.
Ruslana's mother carefully keeps one of his early photographs. Ruslan is on it for two months, he lies on his tummy with his head raised and looks attentively. This is the only photo where the baby is holding his head on his own. In six months it will become clear that this was the happiest time in the life of the family. Life before SMA.
SMA, or spinal muscular atrophy, is a genetic disorder in which the motor neurons of the spinal cord are affected. Muscles in turn stop receiving impulses and atrophy. All skills are lost, including swallowing and spontaneous breathing. A clear, lively consciousness is captured by an immobilized body. In 2010, when Ruslan was diagnosed, it was tantamount to a sentence. There was no cure for the disease.
The first serious problems began at the age of two: bronchitis, pneumonia and the first respiratory arrest. The first resuscitation, the installation of a tracheo- and gastrostomy. By the age of four, Ruslan's room had turned into an intensive care unit, and his mother became an experienced nurse. Because of the tracheostomy, Ruslan could not speak for a whole year. For mom not to hear her son's voice turned out to be another test. I had to learn to understand without words - by breathing, sounds, emotions.
Ruska, as he is affectionately called in the family, is an amazing boy. I learned how to talk to a tracheostomy, operate an electric wheelchair and study online with excellent marks. He understands everything about his illness, but he always smiles and believes in a miracle!
Rusya can no longer hug her mother, scratch her nose or wave away the insect. The most valuable thing today is movement in the hands and fingers. But this is enough to operate an electric wheelchair. In it, he feels truly free and independent. You should have seen how he drives between the aisles of the hypermarket! It is a pity, there is no one to compete with.
In recent years, three drugs have appeared for the treatment of SMA, one of them is Eurydie syrup. The cost of one bottle is 9 500 dollars. You need three of them a month. Take - for life.
Ruslan's parents believe that in the near future the state will pay for Evrisdi for children with SMA. In the meantime, they are frantically looking for ways to begin treatment, while there is something to save and save. And they can't do without you and me.
Give Rousse the chance to ride an electric wheelchair for as long as possible!
On November 9 on the platform dobro.ua the project "The key to living with SMA". Therefore, you can also help Ruslan on the website of our partners.
The family lives in the Zaporozhye region, with. Vladimirovskoe
For more information, you can also contact the staff Of the Happy Child Foundation
