June 14, 2010
I'm more than pleased to spread the news. They help us with information and direction when we were seeking help for our grandson. When doctors failed to give us a diagnosis they gave us info to ask them and started testing as soon asp. The specialist was arogant and rude, he reminded us that we didn't have any medical degrees but the petiatrition listened. Unfortunately the test came back positive after Anthony surcomed to pnemonia. When the specialist was asked why Anthony wasn't tested sooner he replied " I was going to after I repeated the first tests (which were all negotive)". Anthony died at 3 yrs of age, how old did he have to be? The other test were all invasive and painful, thetest for canavans wasn't. When the organization is offering doctors credable information, why don'y they listen? During our quest we recieved great emotional back-up and direction. We spoke to others with children who had canavans and were very hopeful. I commend the foundation for all they do and tell everyone we meet about them. If I had a stick in my eye I wouldn't need a medical degree to know it hurts! When something is wrong and you don't know why it's good to have people that can answer Questions. Patricia Gray ( grandmother of the late Anthoy Gingera
I've personally experienced the results of this organization in...
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
MY ROLE:Client Served & I enlightened quiet a few doctors.