Vesti.Ru and Rusfond have teamed up to help seriously ill children. As part of the project, we talk about children, their parents, who are in trouble, feel sorrow and need, desperate to find funds for treatment. There is nothing worse than the suffering of a child – and nothing more joyful than his recovery. Every week we tell stories about children in order to raise funds for their treatment. Children cannot cope without your help.
Today we talk about the four-year-old Ksyusha Sazonova from the city of Shakhty, Rostov Region.
The girl has an extremely rare and severe congenital disease – a “stone” disease. Muscles, ligaments and joints gradually tighten, Ksenia more and more difficult to move. For a long time, doctors could not find adequate medication. And only after the girl began to take the drug Yakvinus, her condition improved. But this medicine costs about half a million rubles, the child’s family cannot afford it.
From a letter from Marina Sazonova, Ksyusha’s mother: “Ksyusha has one of the rarest diseases, found in less than a thousand people in the world. Due to genetic damage, the body forms bones inside the muscles, tendons and ligaments. People with this disease are often called“ stone “For a long time they couldn’t make a correct diagnosis. Ksenia was born with bent big toes of both legs, the first solid formation appeared on the leg at seven months. Doctors made different assumptions, but could not understand the real reason. Only after the seals appeared on the neck and on the back, specialists for the first time suggested that it was a progressive ossifying fibrodysplasia. Genetic analysis confirmed this diagnosis. They began to choose a treatment for her daughter, but the drugs did not help, Ksyusha developed large fossils of ossification in the armpits and around the shoulder blades, she can no longer raise one arm, also the left leg does not bend.At the consultation, the doctors decided to try treatment with the Yakvinus drug. They gave it in Moscow, at the V.A. Nasonova, and the disease stopped progressing. Unfortunately, the drug is registered for the treatment of patients over 18 years of age, therefore, they cannot issue it to us at the expense of the state budget. We bought one package ourselves, financial opportunities do not allow us to purchase more. Please help save my daughter from this terrible disease, the drug must be taken for at least a year! “
To save Ksenia Sazonova, 160 534 rubles are not enough.
Head of the pediatric department of the Regional Children’s Clinical Hospital Elena Ligostaeva (Rostov-on-Don):
“Ksyusha has a serious genetic disease – progressive ossifying fibrodysplasia, a metabolic disorder in the tissues of muscles, tendons and ligaments. The disease progresses rapidly and continuously, the child loses self-care ability. At present, the drug Jacquinus (tofacitinib) prescribed by a doctor has become an uncontested choice Council of the Federal State Budgetary Scientific Institution Scientific Research Institute of Rheumatology named after V.A. Nasonova. “Therapy will help prevent the development of life-threatening complications.”
The cost of the medicine is 415,408 rubles.
73 588 rub. The viewers of GTRK Don-TR gathered
181,286 rubles readers gathered rostov.rbc.ru, kommersant.ru, 1rnd.ru and rusfond.ru
Not enough 160 534 rubles.
Rusfond (Russian Aid Fund) was created in the fall of 1996 to help authors of desperate letters to Kommersant. After checking the letters, we post them to Kommersant, on the websites rusfond.ru, kommersant.ru, on the air of VGTRK and Radio Vera, on social networks, as well as in 147 print, television and online media. It is possible to transfer from bank cards, electronic cash and SMS-message, including from abroad (details on rusfond.ru). We just help you help. In total, more than 14.682 billion rubles were collected. In 2020 (as of July 2), 621,281,591 rubles were collected, 528 children received help. The Russian Fund is the laureate of the Silver Archer national award for 2000, and it is included in the register of non-profit organizations performing socially useful services. In 2019, Presidential grants won: Rusfond – for the project “Coincidence”, National RCM – for the “Academy of bone marrow donation” plus grants from the mayor of Moscow for the project “Save life – become a bone marrow donor” and the Moscow Department of Labor and Social Protection for the project “Capital twins. ” In 2020, the Rusfond received a grant from the Vladimir Potanin Foundation, as well as a presidential grant for the publication of the Blood magazine5. The President of the Rusfond Lev Ambinder is a laureate of the State Prize of the Russian Federation.
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