Miraculous! Hungarians donated 2M EUR for a sick toddler to get the world’s most expensive medicine
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His parents started a crowdfunding campaign for him aiming to collect 700 million HUF (more than 2 million EUR), which is the cost of the only medicine that can save the 19-month-old toddler.
Zente is suffering from a rare genetic disorder which affects only one in eight to ten thousand people, SMA-1 (spinal muscular atrophy) which results in slow muscle deterioration. Most patients die before reaching the age of 2 due to respiratory paralysis. Today, there are approximately 120 SMA patients officially registered in Hungary (this applies to all types of SMA, not just SMA-1) but due to the
outdated registration system,
professionals say that the actual number is around 300.
However, despite the horrific diagnosis and though SMA is currently classified as an incurable disease, Zente’s parents did not give up. The started a fundraising campaign in which
they asked 1,000,000 Hungarians to donate 700 HUF (2 EUR)
which is the price of two beers for their child.
Zolgensma, currently the most expensive medicine in the world, has only been on the market since May. Furthermore, it is not a cure, just hope because its long-term effect has not yet been proven. But in a clinical trial of the drug, 36 children with SMA received the treatment before they were two and by the end of the trial, none of them needed a permanent ventilation system to breathe.