In an amazing display of kindness and determination, Shani Levi and Ariel Cohen of Miami, Florida, raised over 2.2 million dollars in five days on the crowdfunding site The Chesed Fund, to purchase a cure for their daughter Eliana.
Eliana Cohen was diagnosed with SMA Type 2, a rare genetic condition that prevents Eliana from being able to stand or walk. The medication, called Zolgensma, creates a gene currently missing in a person with SMA Type 2, which ensures she is able to breathe, eat and sit up on her own. As of Monday, Eliana’s name has been changed to Chana bat Shani.
At 2.2 million dollars for a single dose, Zolprensa is the most expensive drug in the world. It was approved by the FDA only for babies under the age of 2-years-old. Eliana was five days away from her second birthday when the crowdfunding campaign began.
“While The ChesedFund.com has successfully raised tens of millions of dollars for all types of emergency causes, there is no greater feeling than what we have right now,” Avi Kehat, founder of The Chesed Fund told The Jewish Press. “This was true pikuach nefashos, and our tefillah is that the medication speedily works on Eliana.”
“We witnessed an unbelievable, unprecedented reaction from all four corners of the world. The way we pulled this off in such a short amount of time is breathtaking,” said Rabbi Matz of the Agudath Israel of Florida, who played a role in the decision to use The Chesed Fund. He explained to The Jewish Press that the family grappled with “what method would produce the quickest results.”
With such a hefty price tag for a single dose of Zolprensa, insurance would only cover the procedure and the doctor, but not the medication itself. Due to a misdiagnosis at an early age, Eliana’s SMA Type 2 was only detected a month ago.
While the “Save Eliana” campaign has officially ended, Rabbi Matz says, “People still want to give and feel guilty they missed the opportunity.” Doris Buzaglo, the family spokesperson, told The Jewish Press that the drug is expected to be administered in the next few days, if all goes well. The family asks everyone to pray for the success of the procedure, and for Eliana’s (Chana bat Shani) continued health.
In a letter to The ChesedFund, the family expressed their thanks and recommended that other families use the crowdfunding site as well. “Without this platform, it would not have been possible for us to reach our goal on time.”