27.10.2020

Life-saving medicine

Ruslan from Saint Petersburg suffers from a rare genetic disease SMA Type 1 - spinal muscular atrophy (infantile onset). This disease affects spinal motor neurons resulting in the increased muscle weakness and ultimately in the cessation of breathing.

The boy’s father says that he was born without any abnormalities but at the age of 4 months he stopped rolling over to his side and lost all the skills he already had and started to limpen. The boy was diagnosed with SMA Type 1. At the age of 7 months Ruslan experienced another breakdown when he stopped moving his legs and holding his neck and back. He never learnt to sit or creep. The third breakdown was observed at the age of 11 months when respiratory and swallowing functions were affected. The child could hardly breathe and essentially stopped eating. Now Ruslan is 18 months old, and nobody knows how much time we have before his muscles atrophy and his breathing ceases.

The only thing that could save the boy is Zolgensma, the most expensive medicine in the world, which costs more than two million dollars. It substitutes the defective or absent gene with its functional copy and stops the progression of the disease. The medicine must be administered once and compulsorily until the age of two years. Sever Minerals Company contributed to the purchase of the medicine, and you, too, can support Ruslan.

We sincerely wish the baby a speedy and full recovery!