Last updated on October 30, 2019
A bad toddler has started treatment that may save his life, even following a crowdfunding campaign raised over a million to gain access to the world’s most expensive medication.
Zante, who’s 19 months old, had to commence the treatment before he turned 2, since the medication has to be administered before that era to work.
His parents put up the crowdfunding effort in Hungary for him the remedy for a rare muscle disease called Spinal Muscular Atrophy (SMA) – therapy that they labeled a”treatment”.
The medication, Zolgensma, prices $2.2m for a single remedy.
And today, that remedy has started.
An article on his FB campaign page thanked everyone for their service.
“I’m pleased to declare that zen obtained you treatment treatment in Budapest now in the children’s hospital! A dreadful difficult period is now over, and a very important chapter starts.
“Zen is performing well right now, but rigorous quarantine, observation, and followup. I expect everything will be nice too.”
The drug utilizes gene therapy, is manufactured in the USA, and isn’t yet enrolled either in Hungary or even the EU.
Hungarian government issued a special license for using this medication in Zante’s case.
SMA is a set of degenerative disorders that result from the reduction of motor nerves and muscle wasting.