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Werdnig-Hoffmann Disease My experience

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.

4 Replies

  • tamar63648 tamar63648 Guest

    My daughter died when she was 1. It was the most painful thing I have ever experienced. My mom died when I was 17 but i never mourned her loss the way I did with my daughter. My husband and I want to have another child but i am just scared that it will happen again.

    • hamza89967 hamza89967 tamar63648

      I am very sorry to hear that it is heart touching story

      but unfortunately this is a genetic disease transmitted 

      from parents to child,hope that there will be a test before

      marriage to discover this gene and prevent this catastrophic 

      out come.you are really great woman that has a courage to reveal 

  • hamza89967 hamza89967 Guest

    I am very sorry to hear that it is heart touching story

    but unfortunately this is a genetic disease transmitted 

    from parents to child,hope that there will be a test before

    marriage to discover this gene and prevent this catastrophic 

    out come.you are really great woman that has a courage to reveal 

    this painful side of the past.

  • Gwenderella Gwenderella Guest

    I am so sorry for your loss. I, too suffered the loss of two of my children to Werdnig-Hoffman disease.

    My husband and I had one healthy son, before our second child (my only daughter) was diagnosed in 1983. She passed away, while I was holding her... in our home at the age of 10 months.

    After going through genetic counseling at Johns Hopkins, it was strongly suggested that future children would be risky.

    However, I gave birth to a set of healthy twin boys...and another healthy baby boy.

    Then this disease visited my 5th son, who passed away at home, after a but with a common cold.

    I felt responsible for somehow believing...and trusting, that this couldn't happen again.

    My marriage of 16 years quickly dissolved.

    We were devastated.

    There was so little knowledge concerning this disease in the 80's...and when my son was born in the 90's, nothing more had really been discovered.

    We suddenly became art of a rare group... with little to relate to. Friends and family were confused...and basically were little help.

    There needs to be more networking.. support..for families who suffer this tragedy. Our family barely survived with out hearts still beating in our chests.

    Prayers for all those who ache so deeply.

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