Our Family Story

I started writing this blog for those effected by Alper's Syndrome.  On Memorial Day 2009 we were awakened by our 3 year old vomiting.  We believed that he had the stomach flu again and cleaned him up and placed him back in back.  When he started to vomit again I picked him up and tried to stand him over by the trash can but he could not stand.  I thought it was because he didn't feel good and it was the middle of the night.  Moments later after we went back to bed I noticed his leg starting to "twitch" and I looked at my husband and asked him what was up with his leg.  Seconds later, we realized that he was having a grand mall seizure.  He violently started shacking and was not responsive.  He grabbed him and placed him in the floor on his side and made sure his head was tilted so he did not choke.  My hisband ran for the phone and called 911.  It seemed like a lifetime but minutes later our fire and rescue were at our home.  I thought these were the worst moments in my life but little did I know that things would get worse.  Sadly, there is no research for Alper's Syndrome because it is so rare and not enough children are affected.  I believe that one is enough, how many families are beinf affected by this horrible disease and no one is doing anything about it.  When is enough enough?