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I have had 4 children. 2 of which had Werdnig-Hoffman Disease. My son was 8 months-old. He was in an Iron Lung for 3 months. My daughter was 5 months-old and I didn't put her in an Iron Lung because it just prolonged the inevitable. My 2 sons that are alive haven't ever had the symptoms. One of them just turned 19 and the other one is 10. My experience with this was not good. And the years that have followed have not been any better. My children both passed away in the 1990's and back then no one ever talked about death in children, like they were ashamed of them. I talked about them all the time to anyone that would listen, I was very proud of them and to have known them as long as I had. When they were born I held them in my arms and when they died I held them in my arms. Both of them. It was the most amazing, sad feeling that I will ever feel in my life. I miss them everyday and I will always love them. This disease needs to go away they need to find a cure before our children have children and they have to go through this. No one should ever have to go through this once, but to go through this twice is the most heart-wrenching events that I wouldn't want to wish on my worst enemy. Thank you for letting me vent. I am so sorry for the other moms' and dads' that have went through the same. I truly, truly am.
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