What the S--T is that? Yes what is that. Thirteen years ago I did not know what this was> Even though I watched the MDA Telethon and JL was my favorite actor. Never put two and two together until that day October 18 - 1997. That was the day my younger sister told me my niece may have it. I was at work when she called to tell me to be home for my nephew because they were being admitted. I was like what for and she rolled those words off her lips --- Muscle Biospy they think she has Spinal. Muscular. Atrophy. I think I asked her to spell it as I could not get how a little girl who was all smiles and joy could have something like this. I had to write it down and said they have to be kidding right. NO. As I went back to work I told a few co-workers what I had just heard. I had the paper with the words on it in my hand and was reading it off. The words hit me -- Spinal SPINE. Muscular -MUSCLE. Atrophy - WEAK or WASTING. I felt sick and had to leave. Good thing I only had 30 minutes left to work. Driving home - the words kept popping into my head. Only thing I could think of was to get to the computer and do a search. Technology - the search came up - MDA - found SMA- first time I read it I said no way. Went to another search -- read it and was stunned. Went back to the MDA site and reread that section on SMA. After reading it I realized tears were coming down my cheeks and I was frozen in time. Waking up I said -- NO way how can this 8 month old happy as a lark little girl have this SMA type1. SMA type1 the worst type -- she sat in her exer-saucer and spun around grabbing the elephants nose and reaching for the spinning balls. She ate her baby food like a champion and she was saying some words. And yet the descriptions for a SMA type 1 child said -- she will never walk, eat, talk or breath and die before the age of two. WTS? My mind was spinning - Gosh my sister, my mom who was with my sister -- they are at the hospital waiting to admit her. Then I heard the door open and they came in. The only good thing about that day was -- she was not admitted for the surgery. Another doctor told the first doctor there was a blood test for SMA. So she had her blood drawn and we waited another 4-6 weeks to hear she has Spinal Muscular Atrophy. Happy Thanksgiving and Merry Christmas. That was when our family vowed we would do everything and anything to keep her alive. Not make her comfortable. Not make small memories - but long lasting one. To defy the odds --- because when you looked into her eyes you saw something more than death you saw unconditional love for living. Her soul was an old soul - with wisdom and knowledge that only came from a higher being. She radiated sunshine, fun, laughter and a spirit that said I will not give up. She gave us the strength to help her through her 13 years. I would not trade her for any other kid -- she is not replaceable. She is the driving force in all that we do for her and our new family - the SMA community. The SMA community is other families with SMA and the SMA researchers. She is the leadership and inspiration behind Miracle for Madison and Friends - SMA Research at The Ohio State University. Read more about this at
www.miracleformadison.org Spinal Muscular Atrophy - you make it what you want it to be - Madison made it into an inspiration to live and to lead a charge to find a cure to end it. Read about how her small fund has paved the way for Gene Therapy Research
http://www.dispatch.com/live/content/local_news/stories/2010/03/02/gene-therapy-fixes-muscles-in-lab-mice.html?sid=101
At the end of her Songs of love song - it says WE LOVE YOU MADISON -- this is what it is all about - not SMA.