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outdated registration system,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.
And why is it so expensive?
Because the rarer a disease is, the more expensive the drug on it is. Therefore, Novartis says on the criticism about the medicine’s price that it takes decades until such therapies can be developed. According to statistics from September, all children receiving treatment showed improvements in their condition.
However, since the drug must be administered until the child become two years old, they needed to collect the money as soon as possible. Fortunately, the whole country was moved for the toddler’s recovery, even Lőrinc Mészáros, a controversial government-close Hungarian businessman
donated 100 million HUF (300,000 EUR)
to him. It might sound miraculous, but with the small donations of many Hungarians, the amount was collected in only six days. And not Zente’s parents are the only ones trying to raise money for their child’s treatment. Earlier this month,
another family in Belgium raised a similar amount for the same medicine.
Source : dailynewshungary.com