8 years 10 months
Summ 0

Рассказ мамы: «В пять месяцев нам поставили наш диагноз,вернее был подтвержден генетическим анализом…в 7.5 месяцев Артемка заболел (пневмония) на фоне нее не смог справиться с дыханием..поэтому нас подключили к аппарату ИВЛ,а через неделю поставили трахеостому..чтобы забрать Темку домой мы открывали сбор на нужную аппаратуру..через четыре месяца мы смогли забрать сынулю домой.

His mom explains: “When he was around 5 months the genetic tests have confirmed his diagnosis..
around 7.5 months Artem fell sick with pneumonia and had the difficulty breathing.. so he was
attached to the lung ventilaiton machine and one week later he was inserted a order
to take him home we had to fundraise to buy the necessary devises.. only after 4 months we were
able to bring him home.
For us the most important thing was to create a comfortable and quality life for Tema. In those days
there was no talk about the cure, it was not even in the process of development. Right now there are
3 types of drugs, but they are not available within our country (Belorussia).
We adjust the devices ourselves and the spares are bought at our own expense. The issue here is
also because all the necessary spares can be found in Russia (or even the medical producers). We
cannot even find the wet wipes for tracheosoma .. such are not sold in Bielorussia. Instead. They
sell the ones made in gauze which loose the bits and threads that risk to end up inside tracheosoma..
Right now the boarders are closed, so we would not be able to restock..we are left with these
problems alone.
Artem needs help in getting the spares and other materials. Please, help us and his parents to give a
comfortable and quality life to Artem!

Thank you for helping Artem!

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3 года 11 месяцев
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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: