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The Circle of Goodness Charity Foundation helped save the life of five-year-old Mark from Krasnodar
Mark and four other children with this rare genetic disease received expensive medications and will soon return to a life full of health and discoveries. Photo: Press Service of the Krasnodar Region Administration
Mark and four other children with this rare genetic disease received expensive medications and will soon return to a life full of health and discoveries. Photo: Press Service of the Krasnodar Region Administration
Vice Governor Anna Minkova reported this on social networks.
"In May of this year, the boy was diagnosed with Duchenne muscular dystrophy, which affects one in 5,000 newborns. Thanks to the foundation, Mark and four other children with this rare genetic disease received the expensive drug "Elevidis" and will soon return to a healthy life full of new discoveries, writes Deputy Governor of Kuban Anna Minkova.
The Krasnodar Region Ministry of Health is actively working to provide children with medicines through the "Circle of Good". This year, 383 Kuban children have already received support in the amount of more than 4 billion rubles.
The Circle of Goodness Foundation was created by the Decree of the President of the Russian Federation to provide support to children suffering from severe, life-threatening and chronic diseases, including rare (orphan) diseases, recalls the press service of the Krasnodar Territory administration.
It is a genetic disorder that affects muscle tissue and almost always affects boys. It is very common, occurring in about 1 in 5,000 live births. Today, the disease is incurable and progresses steadily, leading to death by age 20-30 if left untreated.
Symptoms in the first year of the disease include muscle weakness and clumsiness. The child has difficulty climbing stairs, running and jumping, he may walk on tiptoes, the calf muscles enlarge (so-called pseudohypertrophy). Changes in laboratory parameters are observed almost from birth until the onset of symptoms of the disease (usually between the ages of 3 and 4). This may be the only symptom of the disease.