Pod Save America Hosts Call on Democrats to Cut All Israel Military Aid, No Longer Accept AIPAC Funding
Jews, Israelis Targeted in Austria Amid Surge in Antisemitic Incidents; Local Jewish Community Calls for Action
‘All of Our Strength’: Over 1,000 Pro-Israel Activists Gather in DC for Solidarity Conference
‘Devastated’: Wesley LePatner, Killed in Manhattan Mass Shooting, Was a Jewish Communal, Philanthropic Leader
Sen. Angus King Vows to No Longer Vote for Israel Military Aid Until Gaza Conditions Improve
Europe Won’t Pressure Israel to ‘Commit Suicide’ Amid Gaza Backlash, Palestinian State Push, Says Israeli FM
Israel’s National Soccer Coach Attacked in Athens Before Soccer Fans Chant ‘F–K Israel, Free Palestine’ at Match
New York Judge Sentences Neo-Nazi to 5 Years for Livestreaming Bomb Threats Against Jewish Hospitals
US Pressures Lebanon to Issue Cabinet Decision to Disarm Hezbollah Before Talks Continue
UK Plans to Recognize Palestinian State in September Unless Israel Meets Conditions, Starmer Says
6-Year-Old Israeli Boy With Rare Disease Seeks Lifesaving Treatment
Error: Contact form not found.
by JNS.org
Shalev Bokovza. Photo: YouTube.
JNS.org – 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.
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 US 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.
