Ilya Hudoba
5 years
Summ 0

Нужно успеть закрыть сбор и поставить препарат до того момента, как Илюша достигнет веса 13,5 кг, а отметка на весах уже близка к критической. У Ильи совсем нет времени ждать. С каждым днем он теряет навыки и слабеет. Коварная болезнь понемногу забирает у Ильи возможность двигаться. Вся надежда на препарат “Zolgensma”.

Ilya was born on November 28th, 2017. At birth the child was absolutely healthy. Starting 10 months old, his parents have noticed that he was getting tired, stopped crawling actively. They have turned to the doctors immediately. After a year of running checks he was diagnosed with SMA Type 2. The life of his parents has been divided on “before” and “after”.

The boy is supposed to be on a supporting therapy, but his parents are still, unfortunately, getting through the court proceedings to get Spinraza. They are having no success with other institutions either.

Ilya is three and a half years old, he is happy and smiling, like any other child. But due to his illness and without due cure he will stay handicap.

There is a cure – Zolgensma – but its cost is beyond realistic. There is also a condition: the fundraiser should be done and the cure should be delivered before Ilya reaches 13,5 kg and the weight is close to the critical point. Ilya has no time at all to wait. Every day he is loosing his skills and getting weaker. The tricky illness slowly takes away Ilya’s chance to move. All the hopes are for Zolgensma.

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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: