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Thank you for contributing so generously to help us care for our son Dovy. We truly appreciate the outpouring of tefillos (prayers), love, concern and financial assistance that is supporting us through this difficult challenge. Unfortunately, things have taken a turn for the worse. 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. Dovy was given the terrible diagnosis of early onset ALS. This form of ALS is especially aggressive, causing rapid deterioration, and the long-term prognosis is grim.
Hashem (G-d), in His infinite wisdom, prepared a brand-new treatment that has the potential to save Dovy’s life. Dr. Neil Shneider is the director of the Eleanor and Lou Gehrig ALS Center at Columbia University. He is one of the world’s foremost experts on the FUS mutation that causes early onset ALS. He led the effort to create the first antisense oligonucleotide (ASO) that is uniquely designed to treat ALS patients like Dovy who have a mutation in the FUS gene. ASOs have been successfully used to treat other motor neuron diseases, and Dr. Shneider is applying to the FDA for special permission to give Dovy this newly designed ASO treatment. It is still in the experimental stages, though, and the FDA is only approving it for compassionate use. This unique treatment is our 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 at an alarming rate. The further along he is when they start treatment, the harder it may be to regulate successfully with the ASO. We need to raise $700,000 to cover the cost of the medication, the spinal infusions, all ancillary medical services and hospital fees, and living expenses as we uproot ourselves from Israel and relocate to New York.
Throughout this terrifying challenge, 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 one chance at life that he so truly deserves. We cannot thank you enough for your support. Gratefully yours, Rabbi Dovid and Aliza Kossowsky
Please daven for the immediate refuah sheleimah of: (Aliza’s Hebrew name is Chaya Freida) דוב בער בן חיה פרידא