The key to living with SMA

Ruslan's mother carefully keeps one of his early photographs. In this photo, Ruslan is two months old; he is lying on his tummy with his head raised and looking up 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 that affects the motor neurons of the spinal cord. Muscles gradually stop receiving impulses and atrophy. All skills are lost, including swallowing and spontaneous breathing. A clear, lively consciousness is becoming trapped in 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 tracheostomy 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 his mother, not hearing her son's voice turned out to be another test. She had to learn to understand him without words - by breathing, sounds and emotions.

Ruska, as he is affectionately called in the family, is an amazing boy. He learned how to speak with a tracheostomy, how to operate an electric wheelchair and how to study online perfectly. He understands everything about his illness, but he always smiles and believes in a miracle!

Ruslan can no longer hug his mother, scratch his nose or wave away the insect. The most valuable thing today is the movement in his hands and fingers. But this is enough to operate an electric wheelchair. When he is 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 Evrisdi syrup. The cost of one bottle is 250 thousand hryvnia. He needs three of them per month. He needs to take the drug for his whole life. Ruslan's parents believe that in the near future the state will start to pay for Evrisdi for children with SMA. In the meantime, they are frantically looking for ways to begin treatment, while there’s still something to save. And they can't do it without our help. At dobro.ua we raise funds for 2 2 vials of medicines.

Help us to give Ruslan a chance to ride an electric wheelchair for as long as possible!