We need your help to save our boys, Shalom Binyomin, “Benny,” and Yehoshua Natan, “Josh.” Benny and Josh were diagnosed with a devastating, fatal disease called Canavan disease two and half years ago. Their diagnosis changed our lives forever.
Canavan disease is a progressive brain disorder caused by a genetic mutation that affects children. Children with Canavan disease are unable to sit, stand, walk or talk. As degeneration progresses, many children will lose the ability to swallow, develop seizures, and experience blindness. Children with Canavan disease often don’t live past age 10.
After recovering from the initial shock of the diagnosis, we began to research the disease and learned about a neuroscientist who has dedicated her life to curing Canavan disease. We met with her, she agreed to help us, and we set out to raise the necessary funds (insurance companies don’t support experimental treatments) to bring this treatment out of the lab so it can be used to help patients such as Benny and Josh. Little did we know that we were about to embark on a course to make medical history — to cure a disease that afflicts children while attempting to save our sons’ lives.
Each child will require approximately 3 weeks in the hospital (not covered by insurance companies). These three weeks consist of one week prior to the operation (to deliver the gene therapy) for monitoring, testing, and MRIs. Then about two weeks after the surgery the kids will need to be monitored in the ICU, with follow-ups over the subsequent weeks and months to monitor the effects. The estimated cost per child is $280K. We now need to come up with the final $560K to help #SaveBennyAndJosh.
This journey has lasted over 2.5 years and it comes down to this. Over $4 million raised & spent on research, testing, FDA filings, consultants and the production of the drug. There is a bright light at the end of this long and difficult journey. With Benny and Josh making medical history, their treatment may not only cure children of Canavan disease, but it can lead to a cure for multiple sclerosis, ALS or even Alzheimer’s disease. Imagine being a part of saving not just our two precious souls, but millions of people. Please donate generously….Your help is the difference between life and death for these two beautiful neshamot. Please donate and share this story. “Anyone who saves one life, saves an entire world.” (Sanhedrin 4:5). Let’s come together and save two.
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