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Hello everyone, just like everyone else we are anxiously awaiting the go ahead from the NIH. Zachary hearing continues to worsen. The left ear no longer functions and his right ear has loss about fifty percent. The ENT doctors placed tubes in his ears and began injecting steroids directly into his middle ear, hoping the inner ear would absorb some of the medication. It worked for about 8 weeks, but in the last three weeks his audiogram test results are worsening. His peripheral vision as well as night vision has decreased also. I feel sometimes we are running out of time. He has for 19 years gradually been losing the battle and all along he has been a real trooper. This is the first time I sensed real fear from him thinking he may be totally deaf and blind. Even at birth these little guys are suffering. When I think about all the things he has had to endure, it makes you really appreciate every day, every hour and every minute . I hope the protocol is approved soon and hopefully it can stop the disease from progressing and any further. My prayers are with all of our children.
Jan DaPrato and Zach Eise
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