If I were to tell you about a 20 year old bachur, who is always happy, always smiling, very positive and inspires others, you may think I’m trying to suggest a shidduch. You may even think it sounds like many 20 year olds. But, what if I told you that this 20 year old is suffering from a rare case of ALS which is rapidly destroying his body? Yes, it sounds unbelievable, and yes, that’s Dovy.
What started as having some difficulty walking turned into the use of a cane, then wheelchair and it deteriorated from there. Dovy’s rare case of ALS was extremely hard to diagnose at first, and by the time it was diagnosed it was advanced.
Dovy’s neuromuscular degeneration continues to march onward, claiming the use of his legs, trunk and shoulders. Whole exome sequencing has finally revealed that Dovy has an extremely rare genetic mutation that is causing the problem.
But, hope is not lost! There is a brand-new treatment that we hope will save Dovy’s life. Dr. Neil Shneider, director of the Lou Gehrig ALS Center at Columbia and one of the world’s foremost experts on the FUS mutation, pioneered the first antisense oligonucleotide (ASO) that can treat patients like Dovy who have the FUS mutation. Dr. Shneider applied for special FDA permission to treat Dovy. This unique treatment is the only chance to save Dovy’s life, but it is not covered by insurance and the costs are astronomical.
We are racing against time as Dovy continues to deteriorate. Every day counts! We need to raise $700,000 to cover the cost of the medication, relocation expenses, ongoing care, the spinal infusions and hospital fees.
Throughout this terrifying ordeal, even when facing his own mortality, Dovy remains his cheerful and optimistic self. He is literally carrying us all through this with a strength of spirit that is hidden inside his ever-weakening body. Please help us by giving Dovy the only chance at life that he has.
Please daven for the immediate refuah sheleimah of: (Aliza’s Hebrew name is Chaya Fraida) דוב בער בן חיה פרידא’
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