My Nonprofit Reviews

Our daughter went to our family optometrist for a routine exam. She was back in the exam room and the doctor asked me to come back to the room. He said that he had found a tumor in her eye and had his medical book out. He said it looked like a VHL tumor. That was the first time we heard those words. We were sent to an ophthamologist for surgery on her eye and later to a major medical facility for further diagnostic studies. We also found that she had a spinal cord tumor and needed immediate surgery to remove it. After much frustration we found an excellent surgeon that was able to help our daughter. My husband was intensely working on the internet to find our best options. He connected with the VHLFA and we learned there were other people they were helping with answers to the same haunting questions that we had. She now goes for routine checkups and has had several more surgeries to manage her condition. We attend the meetings to keep informed and know that the VHLFA is only a phone call away.

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