When Shani Cohen’s firstborn daughter, Eliana, wasn’t hitting her developmental milestones, she started looking for answers. At age 1, she was misdiagnosed with hypotonia, reduced muscle tone. But when physical therapy wasn’t improving her condition, her family went back to a neurologist to find answers.
The Cohens finally discovered that Eliana, whose name has since been changed to Chana bas Shani, has an incredibly rare condition called spinal muscular atrophy (SMA) type 2, that will keep her from being able to walk and could significantly reduce her lifespan.
Eliana’s misdiagnosis cost her family precious time: You see, there’s a new FDA-approved “miracle drug” that could help this sweet girl lead a healthy life. It’s called Zolgensma, a one-time transfusion that helps deliver the missing cells children with SMA Type 2 lack.
But here’s the deal: The drug has to be administered before age 2. And, unfortunately, the Cohens’ insurance company won’t pay for the drug, which costs — wait for it — a jaw-dropping $2.2 million.
Now, her family only has a matter of days to raise the money needed to help this young girl before her second birthday on July 18.
If she doesn’t get this drug, she will have to go through regular spinal taps and sedations every 2 to 3 months, without any guarantees for any improvement.
If this isn’t heartbreaking to you, then perhaps you don’t have a heart? The good news is that little Eliana is going to get her “miracle drug” thanks to the generous donations from kind strangers to their Chesed fundraiser, which, in a matter of 4 days has managed to raise over $2,205,047.80. That’s just astounding! Way to go, people!
In a moving video, Shani Cohen hopes that her daughter can achieve her dream: to jump rope. We sincerely hope this dream comes true soon.
This piece was updated on July 15, 2019 at 1:30 PM to reflect that the family has raised the full amount.