Miami-Dade County

Baby needed the world’s most expensive drug. Jewish community raised $2 million in five days.

Aventura mother pleads for help to raise $2 million for baby’s treatment

Shani Cohen pleads for help to raise money to treat her infant daughter Eliana. A campaign on Jewish crowdfunding site The Chesed Fund raised more than $2.2 million in five days after an Aventura baby was prescribed the world’s most expensive drug.
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Shani Cohen pleads for help to raise money to treat her infant daughter Eliana. A campaign on Jewish crowdfunding site The Chesed Fund raised more than $2.2 million in five days after an Aventura baby was prescribed the world’s most expensive drug.

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 (SMA), deteriorates a child’s muscles and Zolgensma can only be administered to patients less than 2 years old.

Eliana received the treatment on 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 fund-raising 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 healthcare attorney, said the Cohens did not want to discuss Eliana’s case with media.

A Facebook page called “Help Us Save Eliana” made a post on July 15 thanking everyone who donated.

“Eliana has taught so many people about the meaning of community, and about how important the children of the world are,” the post said. “Again thank you everyone.”

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 YouTube video 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.

“I was in awe of the miracles that came from human beings,” Solomon said. “Our tradition teaches that if you save one life, it’s as if you’re saving a whole universe.”

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 to raise 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 had 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.”