I first wrote in March of 2007 when my son was being tested for ALS. After many doctors and hospital visits he was diagnosed in August 2007 with ALS. Yes, I know it is unheard of that a 16 year old has ALS, but he did. My husband and I took our son too many local doctors, of which some of them specialized in ALS. Last summer we also took him to John Hopkins which also diagnosed him with ALS. I also sent his file to the National Institute of Health and the National Institute of Neurology which also concurred with his diagnoses.
My son passed away on May 6, 2008 about two weeks ago, after being diagnosed only 9 months ago. Every doctor we saw said he was the youngest person they ever saw with ALS. I'm not sure why I am writing now.....maybe because I feel so incredibly empty like a part of me is missing.....a parent should never have to loss a child. I guess I'm sad, angry and upset because I felt so alone in this journey. I mean every time I would ask a question about what to expect, I was told they only had statistics on adults with ALS, I felt I had no one to go too. I'm also so mad at myself because the night Bobby died, I was very short tempered with him and I can't seem to get that out of my head. Just knowing that he will remember his last day with me, as me being *****y. He wanted to be moved and/or repositioned every few minutes but nothing would make him comfortable and after several hours I got aggravated him. I just hope he can forgive me; I loved him so much....he was my sweet pea.
My son passed away on May 6, 2008 about two weeks ago, after being diagnosed only 9 months ago. Every doctor we saw said he was the youngest person they ever saw with ALS. I'm not sure why I am writing now.....maybe because I feel so incredibly empty like a part of me is missing.....a parent should never have to loss a child. I guess I'm sad, angry and upset because I felt so alone in this journey. I mean every time I would ask a question about what to expect, I was told they only had statistics on adults with ALS, I felt I had no one to go too. I'm also so mad at myself because the night Bobby died, I was very short tempered with him and I can't seem to get that out of my head. Just knowing that he will remember his last day with me, as me being *****y. He wanted to be moved and/or repositioned every few minutes but nothing would make him comfortable and after several hours I got aggravated him. I just hope he can forgive me; I loved him so much....he was my sweet pea.