The family of 6-year-old Israeli boy Shalev Bokovza, who was diagnosed with spinal muscular atrophy (SMA) at 6-months-old, has launched a crowdfunding campaign to raise money for an expensive lifesaving treatment for Shalev.
The rare disease, which affects 80 Israeli children, makes Shalev incapable of conducting basic daily activities and requires him to always have a respirator on hand in order to prevent his lungs from collapsing. The U.S. Food and Drug Administration approved Spinraza, a breakthrough treatment for SMA, in early 2017.
Six injections of Spinraza are needed to treat SMA, with each injection costing NIS 350,000 ($100,000) in Israel. Shalev’s family has raised enough money to fund one of the injections.
In August, the families of Israeli children suffering from SMA protested outside the country’s Finance Ministry in Jerusalem, demanding that the government fund Spinraza.
“I couldn’t remain indifferent to the protest. The parents are asking for something basic, there is nothing more important than that,” said Israeli Economy Minister Eli Cohen, who joined the demonstration, Yedioth Ahronoth reported.
Israel’s Finance and Health ministries agreed to fund treatment for 15 children under age 2 who are severely affected by SMA. Shalev is not among the children who will receive the funding.