A special lady

Today those of us in the SMA community and those who knew this woman, Amy, are incredibly saddened. She lost her battle with SMA last night. She was just 41 years young. And while she outlived her prognosis and several of her siblings (that also had the disease).....it doesn't take away the pain of losing such an amazing woman.

I had the opportunity to meet Amy on several occasions when we would go to the SMA conferences. She was at every conference and I can still remember her sitting there at the assistant dog "booth" showing others her special dog. She even gave birth to 2 daughters which is incredible considering most with this disease could never carry a baby much less for 9 months! It truly is a miracle that she was able to due to her twisted body. Effects from years of this horrid disease.

I'm pretty sure I can speak for most families affected by SMA that when we lose one person, we ALL grieve. It's as if we have lost a member of our family. And even if we didn't know her really well, it still hurts to know yet another precious life is lost to this awful disease. It robs people of so, so much. Please keep Amy's family close in your thoughts and prayers. They lost an amazing mother, wife and friend.