Timur Dautov is practically unable to walk due to the fact that all his tissues have turned into bones in the course of a terrible disease.
Each step is given to Timur Dautov with great difficulty. Several years ago, the words of doctors sounded like a sentence for this young man - fibrodysplasia. At the age of 12, all of Timur's muscles, tendons and ligaments began to turn into bones.
Timur Dautov: “I was born a healthy ordinary boy. After birth, changes were seen on the big toes. Lumps and neoplasms appeared on the back, and they increased every year. I was taken to hospitals, to various healers. But nobody could say anything."
Fibrodysplasia is, in simple words, a gene mutation. And Timur could not be diagnosed for almost 7 years. The disease is very rare: in Russia, about 50 people suffer from it. And the worst thing is the lack of medicine.
According to the Dautovs, drugs for the disease have been developed abroad for 30 years, and in about two years they should go on sale. Now for Timur and his mother, this is the only hope.
Munira Dautova, Timur's mother: “The news of the disease, of course, was very scary. The child was initially completely healthy: he rode a bicycle, could walk on his hands. From the age of 12, problems began. From 12 to 18 years old, it was not life, but horror, seeing how your child suffers. There will be a drug that blocks the mutated gene. Are looking forward to. This is a great happiness, as if we were given a second life."
This little talented musician can rightfully be called a lucky one. From birth, the life of Artyom is painted with strict diets, because in the boy's body protein is absolutely not broken down.
The parents managed to do it on time, because even a small use of a piece of meat, a spoonful of cottage cheese and practically all products could affect Artyom with grave consequences. But another medicine that literally saves Artyom is music.
Promotional video:
Today Mikhail Kuznetsov and his son organized an annual meeting with patients suffering from rare ailments. Once upon a time, Mikhail himself was faced with a difficult diagnosis of his son, after which he decided to help special people.
The skeleton of Harry Eastlack, the most famous patient with progressive fibrodysplasia
Mikhail Kuznetsov, Chairman of the Board of the Interregional Organization of Patients with Fabry's Disease and Other Rare Diseases: “As I learned that my son, Kirill Kuznetsov, has a rare genetic disease - Fabry's disease, he decided to create an organization and seek treatment.”
Nature has put all these people in a difficult situation, but they are all ready to fight. Mikhail's son, Kirill, was able to overcome the disease and is ready to help everyone else find their way to a healthy life.