Josue Israel Fighting for his life!
Born on February 17, 2021, Josue Israel was diagnosed with Type 1 Spinal Muscular Atrophy. He is fighting for his life!
In addition to breathing apparatus and feeding tubes, this little boy requires medication that has been described as the most expensive medication in the world. Evrysdi (risdiplam) costs cost $15,000 for each two-month supply.
Josue cannot swallow and is fed by a gastric tube. He cannot breathe and is connected to multiple machines. He needs to continue taking the medication to live and recover the movement of his legs and arms. He can´t sit, hold his neck and back, and he can´t move from neck to toe. But he can see, hear and understand. The doctors said his brain is fine.
We verified the $15,00 cost of this medication with three sources.
We met with Josue's grandmother, a school principal in Acuna. She said the family set up a Go Fund Me page in Mexico and is needs help from many sources to pay for her grandson's medication.