Charity Fund "Zhuldyz"

Little Emilia's health depends on one shot of Zolgensma

Two-year-old Emilia has a rare genetic disorder called spinal muscular atrophy. With SMA, muscles atrophy and the child loses the ability to sit, crawl, walk, swallow and breathe.

Emilia needs the drug Zolgensma, which can save her life, which costs $2,234,031 (one billion tenge). The drug is not registered in Kazakhstan and…

Emir Shakhmarov has been diagnosed with Spinal Muscular Atrophy. Spinal muscular atrophy is a genetic disorder in which the SMN1 gene is damaged. SMN1 manifests as flaccid paralysis and atrophy of all muscles. The most expensive drug in the world, Zolgensma, is needed to save him. This drug will stop the progress of the disease and Emir can lead a normal life. Without treatment Emir will…