So this boy named Riško will get currently the most expensive medicine in the world .

Little Riško is 20 months old and he was genetically confirmed with a diagnosis of spinal muscular atrophy type 1. when he was 6 months old. In this neuro-muscular disease, either the protein-producing gene is missing or is mutated. This gene is responsible for the normal function of the motor neuron that controls muscle work. Gradually all the muscles of the boy will slacken, including gobbling and breathing . Medicine is given only once, directly into a vein. However, this medicine has not been authorized in the EU yet, only in the US since May 2019. The globally established pharmaceutical company Novartis set its price at $ 2.125 million, currently the most expensive drug in the world. The medicine must be given within 2 years of the child's birth. So time plays against him. Parents approached a hospital in Slovakia, they would be willing to give it to Riško if all legislative procedures regarding the import of the medicine will be handled. However, the problem is that we have to buy the medicine ourselves. This medicine corrects the gene responsible for the production of protein, which is important for muscle function. Riško suffer by SMA type 1. which is the most serious . Children with SMA type 1 without this medicine die on average until 2 years.

If you decide to help, you can find more information in the facebook post below:

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Source:

https://www.facebook.com/RiskoSMA1/posts/592813818162217

https://www.forbes.com/sites/joshuacohen/2019/06/05/at-over-2-million-zolgensma-is-the-worlds-most-expensive-therapy-yet-relatively-cost-effective/#b7c5bb545f5a

https://www.slovenskemamicky.sk/maly-risko-bojuje-s-vaznou-chorobou-pomoct-mu-moze-drahy-liek-z-usa/

https://zriedkavechoroby.blog.sme.sk/c/520000/madarsky-chlapcek-dostal-najdrahsi-liek-na-svete.html