The only one with Rett syndrome in Ukraine

"Your child has a rare genetic disease ..." What happens with parents, they hear it after long months of diagnosis searching? And most importantly, what will they do? Oleg Podpalov has not just a rare disease, it is - the only boy with such in Ukraine. Israel's doctors can help to the boy, price of the course - 136 000 UAH, which the parents hasn't.

Rett syndrome - a rare genetic disorder. General and the main feature of people with Rett syndrome are multiple violations of movement, breath, mental capacity caused by genetic mutations that result in all brunches of daily life. Rett syndrome is now known all over the world and is the result of a new mutation of a gene located on the X chromosome. This disease is possible among members of different social classes, races, cultures, with a frequency of 1 case per 10 - 15 000 births. Typically, this is a girls. There are about 60 boys with the syndrome in the world. Oleg's doctor said there is only boy in Ukraine.

By this syndrome kids starts develop as others: starts keep the head, then sitting, crawling, smiling and waving by hand "goodbye", and sometimes even have time can learn how to speak. But then, they gradually lose their skills. In that year Oleg stopped waving a hand, then play, later - to say the words. Stereotypic movement emerged in the form of a pens licking. Now Oleg is six years old. He does not speak, does not understand the question, but he is very sensitive to intonation.

Most of these children (5-6 people) in Israel. There is one of the best specialist in the world by Rett syndrome, in “Shiba's” clinic, Dr. Bruria Ben-Zeev. Consultation with a specialist of this level is very expensive, but a child's life is more expensive, it is priceless. Gathering 136,000 UAH, we can save the life of the child (blood tests, MRI, genetics counseling, diagnosis and rehabilitation of 10 procedures). And what could be more important?

Name: Oleg Podpalov, 6 years old

City: Dnepropetrovsk

Diagnosis: Rett syndrome