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.
We also learned that a cure for Canavan is a gateway to treating other diseases such as Alzheimer’s, Parkinson’s Disease, ALS and Multiple Sclerosis, making our journey about so much more than just Benny & Josh.
We have come so far and we are so close to what once seemed like an impossible goal. But we still owe the company manufacturing the drug $650,000 due this coming Sunday MAY 31st or we risk late payment penalties, or worse, delays in treatment that could mean irreparable damage to our sons’ lives. And in a few weeks, shortly after Shavuos, we will be signing a contract with the hospital where the boys will receive the treatment, committing to payment of an additional $560,000. ($280,000 per child for the surgery and hospitalization costs) Bringing our total current fundraising goal to $1.2M.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.
