Besides being born with a very rare Genetic condition ,My grandson is legally blind. He started losing his sight at 6 years old. Hes now 14 and recently said to me in the car " Grandma, Im never going to get to drive cause I cant read the road signs. " That broke a grandmas heart.
My grandson started a new treatment recently. It requires they go to NJ for a full week, every 3 months. ( this means a hotel room, missing school, missing work) Insurance wont pay for this treatment at 2000.00 each time they go. This treatment isnt a cure...but what we are hopeing is it will keep him seeing untill a transplant is available. After just one week of treatment ..on the drive home he was able to read a few road signs !! And the other day he looked at his mom and said " Mom, Im confused..I didnt know the living room was yellow, I thought it was beige like the other rooms " !!!
After one week of treatment...he was able to see the yellow !! As I said, this isnt a cure. And the small improvements dont last forever. He will have to continue these treatments, every 3 months, indefinitely. But he can have a better quality of life while waiting for a transplant. Please help me help my grandson and his family.
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