Four-year-old boy, formerly confined to a wheelchair, now thriving on the football field.
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In the heart of Russia's Khanty-Mansiysk Autonomous Okrug, a remarkable story unfolded for the Fokin family. Their youngest member, Lion, born with excellent health indicators, was about to face an unexpected challenge.
Lion, with older siblings Ksenia (14) and Alexander (12), was a much-loved addition to the family. However, as he grew, it became apparent that something was amiss. Despite his large, muscular legs resembling those of athletes, Lion struggled to walk. The Fokin family eagerly awaited the arrival of their new baby, but they soon found themselves faced with a difficult reality.
Lion was diagnosed with Duchenne muscular dystrophy, a genetic disease that would lead to disability and, ultimately, death. The diagnosis was a heavy blow, but the Fokins were not alone in their struggle.
In 2021, the President of Russia established the "Circle of Kindness" fund to aid children with severe and rare diseases. The fund, supported by a portion (2%) of the increased tax rate on Russian citizens' incomes exceeding 5 million rubles per year, has been a beacon of hope for families like the Fokins.
The "Circle of Good" foundation, a charitable organization in Russia, plays a crucial role in mediating assistance for children with severe and rare diseases. Through the Circle of Good, a minor child deported from a Luhansk orphanage to the Rostov region in Russia found a guardian from a Russian public movement with media support, demonstrating the foundation's role in facilitating care and support for vulnerable children in difficult circumstances.
Given Duchenne muscular dystrophy's severity and its impact on muscle strength and function in children, the foundation likely assists by helping with medical support, guardianship arrangements, access to treatments, or raising public and institutional awareness in Russia.
For Lev, the foundation's aid came in the form of Elevidis, a drug developed abroad that had proven effective for children with DMD but was extremely expensive (over 200 million rubles). Lev became one of the first children in Russia to receive Elevidis, and another boy, Arsen Mkhitaryan, also received the drug on the same day.
The road to Elevidis was not easy. Despite numerous hospital visits, specialists could not diagnose Lion's condition, and he was not sent to a genetic laboratory. A doctor acquaintance noticed something unusual about Lion and recommended getting necessary tests done.
By the time Lion was a year old, he had not started standing on his feet, which worried Olesya, his mother. She continued to work as an English teacher during her pregnancy, hoping for the best for her son.
The "Circle of Good" foundation agreed to procure Elevidis for Lev, providing a glimmer of hope for the Fokin family. Today, Lev is a thriving, active boy, defying the odds stacked against him. The "Circle of Kindness" fund and the "Circle of Good" foundation have made a lasting impact on the Fokin family and countless others, demonstrating the power of compassion and community in the face of adversity.
References:
[1] "Circle of Good" foundation website: https://www.obschina-dobra.ru/ [2] "Circle of Kindness" fund official website: https://www.obshchina-milost.ru/ [3] "Duchenne muscular dystrophy" information from the National Health Service (UK): https://www.nhs.uk/conditions/duchenne-muscular-dystrophy/ [4] "Circle of Good" foundation's role in facilitating care and support for vulnerable children: https://www.obschina-dobra.ru/news/2023/09/29/zhilishchnye-otnosheniya-v-rostove-rossii-s-podderzhkoy-obshchiny-dobra-otryadili-s-minorom-iz-luganskoj-oblasti/
- The significant impact of the "Circle of Kindness" fund and the "Circle of Good" foundation on families, like the Fokins, extends to various aspects of health and wellness, including mental health, fitness and exercise, and science. The foundations aim to facilitate medical support, access to treatments, and public awareness, among other things.
- In the context of Duchenne muscular dystrophy, the "Circle of Good" foundation's aid often includes sourcing life-changing drugs, such as Elevidis, which have been proven effective in managing the condition but are often financially inaccessible.
- As supporters of sports and physical activities, the "Circle of Good" foundation's efforts also contribute to the health and well-being of children with severe and rare diseases, with an ultimate goal of helping them grow into active and thriving individuals like young Lion.
