My mind has been on edge since I heard the news about the passing of A., the girl with the same Metabolic-Disorder as I. When a child dies of this, I feel bad; but, this girl was almost 30. Why was I chosen to live for so long and to continue and God took her away? I believe she was an only child. It doesn’t seem fair, really.
Why are so many of these other children with this disease having other issues both mental and physical. You would not have believed A. was going on 30. She looked like a child of 12, maybe and she could not really talk nor, take care of herself. Was it really the formula that the doctor created in Children’s Hospital of Los Angeles that kept me alive and kept me from having the other medical issues that I could have had with this disease?
So many questions with no answers. I know I am very blessed and I will continue to try to take care of myself and live the best way I can.