A young couple are in the fight of their lives. Their adorable little 1 1/2 year old daughter was not yet walking. While not overly concerned, they took their daughter for precautionary testing. What was discovered was inconceivable. Eliana was diagnosed with very rare genetic disease called SMA 2 that will not allow her to walk. As they wrapped their head around this news and did some research of their own they discovered that the FDA had approved a drug that can create this missing gene. The name of this “miracle drug” is Zolgensma. The drug is made by Novartis/Avexis. Medically speaking, it is imperative that this drug be administered before age of two. Their daughter is turning two in a just a one week. Time is of the essence. The cost of Zolgensma is an astronomical, as it costs two million dollars to have administered. Eliana’s parents put in a request to Medicaid but Medicaid has denied the request to cover the cost of this drug. A follow up appeal was denied as well. At that point, the family hired an attorney as a hearing officer and they took the case to the local court. After a week, they were told that the decision was final and that Medicaid is not required to cover the astronomical cost of this drug. Medicaid approval was there only hope. They are now trying to spread awareness and to help raise money. If their daughter does not have this drug in the by next week she may never be able to walk as the drug cannot be administered after the age of two. In addition to not being able to walk or stand unaided, other symptoms shown in children with SMA2 include a tremor of the fingers, breathing issues, and feeding difficulties. As friends and family, we are humbly request that you open your heart to this cause. Please spread this link via what app, social media, etc. The next few days of fundraising are crucial. This young couple is begging our Acheinu Bnei Yoroel raise the funds needed! The funds need to be raised in the next 48-72 hours. Please open your heart for this little girl and her family.
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