Jewish Community Raised $2M in 5 Days for Baby Who Needed the World’s Most Expensive Drug

UPDATE:

On July 28, four Rabbanim in Miami, Rabbi Yosef Galimidi, Rav of Edmond J. Safra Synagogue in Aventura, Florida; Rabbi Yaacov Gross, Rosh Kollel of Miami Beach Community Kollel; Rabbi Abishai Levi, and Rabbi Moshe Matz, penned an open letter to the community, with a fascinating update to the campaign for Eliana Cohen.

The letter explained that the amount of energy and tremendous outpouring of support generated by this Chessed Fund campaign did not go unnoticed. Out of nowhere, with clear hashgachah pratis, doors that had previously locked suddenly opened and little Eliana’s medicine was paid for by a third party. Additionally, in the past few days, other insurance companies have changed their policy going forward, so that other children like Eliana will be eligible for coverage of their medication.

As soon as this became clear, the family reached out all donors and updated them about this development and offered to refund the donations. The act of transparency and emes is a true kiddush Hashem in its own right. The family wants to assure that the multitudes of people who contributed to this campaign have complete clarity and comfort with how their hard earned tzedakah funds are being handled. Alternatively, the Rabbanim involved are creating a fund with whatever monies are not being returned that will be used exclusively to aid the Cohen family for further rehabilitation treatments, as well as other seriously ill children who need immediate assistance.

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A young couple in Aventura was running out of time and praying for a miracle. Their daughter Eliana Cohen, fast approaching her second birthday, was diagnosed with a rare disease that could keep her from walking, eating and breathing on her own.

But her best hope also happened to be the world’s most expensive drug — a $2.1 million treatment called Zolgensma.

Without support from insurance, her parents, Ariel and Shani Cohen, turned to their Jewish community through social media in hopes of covering the staggering cost. The outpouring of support, from South Florida and around the world, proved equally staggering.

A campaign on the Jewish crowdfunding site The Chesed Fund raised more than $2.2 million — in just five days. The deadline was critical because Eliana’s disease, spinal muscular atrophy, or SMA, deteriorates a child’s muscles and Zolgensma can only be administered to patients less than 2 years old.

Eliana received the treatment last Friday and the little girl, who has since turned 2, was doing well over the weekend, said Rabbi Yosef Galimidi of the Edmond J. Safra Synagogue, who is close with the family.

“It wasn’t one person’s miracle,” Galimidi said. “It was a team effort.”

Money was donated in dollars, British pounds and Israeli shekels.

The fundraising effort is now closed and was verified by The Chesed Fund, meaning the website required documents including Rabbinical endorsements, medical bills, and at least two references to confirm the cause was legitimate. The Cohens, an Orthodox couple, did not respond to the Miami Herald’s multiple attempts for comment. Maria Santi, the family’s health-care attorney, said the Cohens did not want to discuss Eliana’s case with media.

Jacob Solomon, president and CEO of the Greater Miami Jewish Federation, said he and the federation found out about Eliana’s story by watching a video posted online featuring Eliana’s mother and receiving emails about the campaign.

The federation quickly researched the situation, Solomon said. He was shocked to learn the $2.1 million price was real. Time was ticking, so the federation sent out its own email to about 50,000 people to spread the word. He was relieved when the family reached its goal.

“Our tradition teaches that if you save one life, it’s as if you’re saving a whole universe,” Solomon said.

The video was produced by MicDrop, a communications training company founded by former WSVN reporter Rosh Lowe, which published Shani Cohen’s plea for help on July 14. It has since been viewed more than 71,000 times.

Lowe said the family approached him for help in raising awareness about their situation. After the video was posted online, he said the campaign raised $1.4 million in 15 hours.

“There’s this saying, ‘Words from the heart go to the heart,’ and that’s what happened here,” Lowe said.

The video also explained Eliana’s medical plight. When she was 8 months old, her parents noticed her lower body muscles were very weak, Cohen said in the video. While other babies her age were standing up, Eliana could barely crawl.

The doctor suggested taking her to a neurologist and a physical therapist when she was a year old, Cohen said. She was misdiagnosed with a condition that is treated with physiotherapy.

Cohen said she put her life on hold to take care of her daughter. She didn’t know what to answer when people asked why she wasn’t working or when her daughter would start school. When she filmed the video, she still didn’t have those answers.

“We hoped that any day she would get up and run to us,” she said.

But Eliana continued to grow weaker, and an MRI scan came back clean. Doctors still didn’t know what was wrong.

The next test was for SMA, a disease so rare Cohen said the doctor didn’t think that would be Eliana’s diagnosis. Babies diagnosed with the most severe form of SMA die before their second birthday, according to NPR.

“‘We just have to check it off the list. Make sure it’s not it,’” Cohen recalled the doctor saying.

The doctor was wrong, she said. Any hope of Eliana running to her mother was gone.

The Cohens were told there was a “miracle cure,” but it was priced at $2.1 million. They spent the following weeks fighting with their insurance company and scrambling to raise the money.

Zolgensma, a gene therapy that targets the cause of SMA, made headlines in May as “the most expensive drug ever.” At one point, Novartis, the pharmaceutical company that owns the Zolgensma drugmaker, said the treatment could cost $5 million, NPR reported.

So why is it so expensive? It’s a one-time procedure that is only administered to babies under 2 years old who have been diagnosed with SMA. The only other treatment for SMA, Spinraza, costs hundreds of thousands of dollars a year and is administered on a regular basis. That adds up to more than $4 million in a decade, according to Forbes.

Eliana’s case isn’t the first time families have had to resort to crowdfunding websites like GoFundMe to pay for medical expenses. High prescription costs and lack of sufficient insurance coverage leave people relying on the generosity of others online, and not everyone can meet their goal in time.

“My daughter has a disease that has a cure,” Shani Cohen said on the video, “and she deserves to get the cure regardless of the money or technicalities involved.”

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Following the campaign’s close, the family posted on The Chesed Fund:

To Acheinu Bnei Yisroel,​

When we began this campaign 4 days ago, we embarked upon the impossible. We desperately needed to raise 2M+ in the course of a few days to save of the life of our daughter Eliana. Very quickly, Klal Yisroel joined together and in an unprecedented display of Achdus, this lifesaving campaign gathered force. With great Siyata Dishamya and B’chasdei Hashem, we were able to reach this unprecedented goal and are now in a position to receive the miracle drug.

We want to take the opportunity to recognize and thank each and every one of you for your tefillos and generous support.

Please continue to pray for Chana bas Shani, as we still have a long way to go! [Eliana’s name has been changed to Chana.]