Eliana Cohen, daughter of Shani Levi Cohen and Ariel Cohen, ( Miami Forida) is about to turn 2 years old.
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She has been diagnosed with SMA type 2, which is a very rare genetic disease. In May 2019, the FDA approved a “miracle drug” Zolgensma, which can create the gene that is missing.
This approval has allowed for the drug to be administered only for children up to 2 years of age. We are now in the fight for life trying to get this medication for Eliana.
This medication could help Eliana to have the ability to stand and hopefully walk while securing her ability to eat and breathe on her own. This drug is a one time dosage that costs around $2.2 million dollars. At this time, insurance is denying the approval of this drug for Eliana.
We have exhausted all aveues including doctors, attorneys, judges and appeals to help us. If the baby does not get this medication by July 18th she will no longer be applicable, as the FDA only approves for babies under 2. This new drug Zolgensma made by Novartis/AveXis is the “miracle cure”. We are asking for your help so Eliana can have this life changing treatment. ++We have less than 1 week to achieve this goal.++ Anything that you can contribute is sincerely appreciated.
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If you have any way to help, please contact us at [email protected].