The story of 9-year-old Lesha is very unusual. At 1 year old, he began to fall for no reason and had trouble walking, and stopped talking. He spent several months with his mother in hospitals, underwent all the examinations and tests - and finally the doctors found the cause of the problems. It turned out that Lesha is a carrier of a broken gene. This extremely rare genetic disease is called Aicardi-Goutieres syndrome. Only 400-500 cases have been recorded worldwide.
At first, doctors said that the prognosis for such a syndrome was very bad. But the parents did not give up, did not stop rehabilitating Lesha themselves at home and in rehabilitation centers. Because against the background of the genetic syndrome, Lesha developed problems with movement and balance, and was diagnosed with cerebral palsy.
It turned out that Lesha has an atypical course of the disease, when the body adapts and somehow compensates for the broken gene! His intelligence and speech correspond to his age. The boy is gradually regaining his lost physical skills. He learned to stand against a wall for 5 seconds, walked with a walker, and started walking with crab canes. He took his first independent steps without support. Now he walks independently for short distances, but falls a lot. He is intellectually well developed, has a 3rd junior category in chess, and studies at a regular school. Alyosha exercises daily: with rehabilitation specialists, in the pool, on a climbing wall, adaptive alpine skiing, and in the evenings at home he does his homework.
In fact, if you stop rehabilitation for a while, a rollback occurs. He loses the skills he worked so hard to develop. Unusual Alyosha needs our support!
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