Вести.Ru and the Russian aid Fund have teamed up to help seriously ill children. In the framework of the project we talk about the children, their parents, who are in trouble, sorrow and need, desperate to find money for the treatment. There is nothing worse than suffering child – and nothing more joyful than his recovery. Every week we tell stories about children to raise funds for their treatment. Without your help the children can not cope.
Today we tell about four-year Ksenia Sazonova from the city of Shakhty in Rostov region.
the girl has a very rare and severe congenital disease – stone disease. The muscles, ligaments and joints gradually condensed, Ksenia harder to move. The doctors could not find adequate medical therapy. And only after she began to take the drug aquinos, her condition improved. But this drug costs about half a million rubles, the purchase can not afford.
a letter From Marina Sazonova, mother Susie: “Susie is one of the most rare diseases, it revealed less than a thousand people in the world. Because of the genetic breakdown of the body forms bone within muscles, tendons and ligaments. People with this disease often called “the stone”. The daughter could not make the correct diagnosis. Xenia was born with crooked big toes of both feet, in seven months appeared first on solid education leg. The doctors expressed different assumptions, but the real reason could not understand. Only after the seal appeared on the neck and back, the experts first suggested that this progressive fibrodysplasia ossificans. Genetic analysis confirmed the diagnosis. The daughter began to pick up medication, but medication helped, she had developed large foci of ossification in the armpits and around the shoulder blades, one hand can not raise, also not bent left leg. The doctors decided to try the drug treatment of equinus. Ksusha began to give in MosKBE research Institute of rheumatology named after V. A. Nasonova, and the disease ceased to progress. Unfortunately, the drug was for the treatment of patients older than 18 years, so at the expense of the state budget we give it to people who can’t. One pack we bought themselves, the financial resources do not allow you to purchase more. Please help save my daughter from this terrible disease, the drug you need to take at least a year!”
To save Ksenia Sazonova not enough RUB 534 160
Head of the paediatric Department of the Regional children’s clinical hospital Elena Ligostaeva (Rostov-on-don):
“Susie, a severe genetic disorder – fibrodysplasia ossificans progressive, the disturbed metabolism in the tissues of muscles, tendons and ligaments. The disease is rapidly and continuously progresses, the child loses the ability to self. No alternative choice for the treatment at the moment has become the drug of Aquinas (tofacitinib), appointed by the medical Council of FSBI “research Institute of rheumatology named after V. A. Nasonova”. Therapy will help to prevent the development of life-threatening complications.”
Cost of the medicine 415 408 RUB
73 588 RUB gathered viewers GTRK “don-TR”
181 286 RUB gathered readers rostov.rbc.ru, kommersant.ru, 1rnd.ru and rusfond.ru
missing 160 534 RUB
to HELP XENIA
Rusfond (the Russian aid Fund) was established in the fall of 1996 for the help to authors of desperate letters in “Kommersant”. Having checked up letters, we place them in the “y” on the sites rusfond.ru, kommersant.ru in the air of RTR and radio “Faith” in social networks, as well as in 147 print, television and online media. Possible transfers from the Bank cards, electronic cash and the SMS, including from abroad (details on rusfond.ru). We just help you to help. Just collected over 14,682 bn In 2020 (on July 2) collected 621 281 591 RUB, the assistance received 528 children.Rusfond is the laureate of nationalnational award “Silver Archer” for the year 2000 is included in the register of NGOs – performers of public utility services. In 2019 presidential grants won: Respond project “Coincidence”, the national RDCM – on “Academy of bone marrow donations,” plus the mayoral grants for the project “Save a life – become a bone marrow donor” and the Department of labor and social protection of Moscow on the project “Capital of twins.” In 2020, the Responde received a grant from the Vladimir Potanin Foundation, and a presidential grant for the publication of the journal Кровь5. The President of the Russian aid Fund Lev Ambinder – laureate of the State prize of the Russian Federation.
Fund Address: 125315, Moscow, and/I 110;
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Phone: 8-800-250-75-25 (toll-free in Russia), 8 (495) 926-35-63 from 10:00 to 20:00