Masha Leontyeva
4 years 5 months
Summ 0

Машенька родилась абсолютно здоровой девочкой.

Девочка развивалась, как обычный ребенок, но месяцам к четырем родители стали замечать, что Маша слабее, чем ее сверстники, часто заваливалась головка, Машенька с трудом переворачивалась и совсем не ползала.

Родители Маши обратились к врачам…

Masha was born healthy. She was developing according to her age, but around 4 months her parents
noted that she is weaker than the children her age, her head drops, she had difficulty turning and did
not crawl at all.
Masha’s parents turned to the doctors..
They have started endless medical check-ups. They have gone through many massage sessions, the
rehabilitation programs, but without any result. Around 11 months Masha was still not able to sit,
she has never stood on her legs which were not strong enough. The medical staff in the last
rehabilitation center has advised to run the genetic tests. On October 19th, 2019 the genetic tests
came through confirming SMA Type 1, which the most aggressive form of this disease. The
irreversible consequences can occur quickly and unexpectedly. In December 2019 she was
recognized handicap. Such illness cause the atrophy of muscles, starting from the limbs, than to the
lung and cardio muscles till the child is not capable to breath and to eat independently. The doctors
recommend Masha to do a daily routine of breathing exercise in order to train the lungs because if
they grow weaker it make cause breathing problems.
Right now only Zolgensma can cure the illness and give Masha the opportunity to live her life fully/
Its cost cannot be supported by a normal family – 2,234,000 US$. The illness is very sever and can
worsen the situation any moment so the faster she gets the treatment the better. We can help her!
In our country there are so many family who have been raising funds for Zolgensma and have
managed to get the cure for their kids. So we would like to get the same treatment for Masha to get
the cure and to life her happy and full life.

Thank you for helping Masha Leontyeva!

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3 года 11 месяцев
Vadim Sorokin

На данный момент Вадим получил 4 загрузочные дозы препарата “Спинраза”. Однако, данный препарат является лишь поддерживающей терапией, но для того, чтобы остановить заболевание, Вадику необходим всего 1 укол препарата «Золгенсма», но его стоимость непосильна для простой семьи.

Диагноз: Спинальная мышечная атрофия (СМА) 2 типа
Необходимо: Zolgensma
Место жительства: