Petr's Spinal muscular atrophy help

I am starting a medical campaign fund for my Czech friend, Petr who has SMA aka Spinal muscular atrophy which is a rare neuromuscular disorder characterised by loss of motor neurons and progressive muscle wasting,  which often unfortunately leads to an early death.

Petr is a positive 20 year-old young man  who likes Ice hockey, Football and playing games on his touchpad. I met Petr a few years ago in an online icehockey game and we got chatting, I went to visit him first time in March 2018 and saw how he lives his life and his family help him  which requires huge dedication.  His family makes his food by injecting it via a tube and Petr needs a medical ventilator to help with his breathing

Unfortunately in Czech Republic the insurance doesn't cover anything  because the cure is new, called Nusinersen( spinarza) is the only approved medication to treat spinal muscular atrophy. It is administered directly to the central nervous system using an intrathecal injection.

The situation is urgent and I'm hoping that we can raise money for my good friend Petr, whose aim is to get treatment in USA.

Dekuji/Thanks/Kiitos

Sami