My Story

Hi, my name is Gracee Nichole Sadler. I am 8 months old. I was born on February 20, 2007. I have SMA type I, and I was diagnosed with this stupid, awful disease on July 12 2007 when I was 5 months old. My mom and Dad were in complete shock, and sometimes still are. They felt like the world was ending pretty much, There was no hope giving to them. The doctor that diagnosed me told my mommy in Wal-mart! Over the phone! She was with me and my big sister Lindsey( 7 ), and she almost passed out after the Dr. told mommy that there was absolutely no cure for this, and that I would most likely not live to see the age of 2. She called daddy and they cried along with the rest of their family all day. And many days to come after that=(. After that day they started looking for hope. They found a few people on the internet that put them in the right direction. One person helped us a lot, that lives pretty close to us, Kim Sykora. We called her regular Dr. and tried to plan out what we would do once we found out that horrible news. The Dr. told my mom and dad to take me to get a feeding tube put in while I was still strong and could handle the surgery well. So we went and did just that, Mom and dad were very scared to do this, but now realize that it was the best thing for me because I would eventually start losing my swallow. While we were in Kansas City at the Children's hospital Kim Came and met me. I don't really remember because I was pretty out of it from my surgery. But she told mommy and daddy all the things that they needed to have before leaving that hospital. She said I would need a Cough Assist to help me clear my lungs and feel better, a Bi-pap to help me sleep comfortably at night and during my naps. A suction machine to suck out all of my secretions or I would choke, and a pulse ox to watch my oxygen and heart rate all the time. They learned how to use all of these machines and we were off on our journey to help keep me alive with a good quality of life.

Things have been rocky since then, but good (considering). I have been accepted in a Drug trial in California at Stanford. The drug is called Hydroxuera. They are hoping to slow or stop the progression of the weakness with this medicine. Kids have been moving their legs, talking really well, and even able to hold their heads up at times. It is different with each kid, but My family has high hopes for me. We have to fly to California once a month for 6 months and then about every 2months for 6 more months. It is tough, but they are willing to do anything for me. Everything is still overwhelming at times for my mom and dad, but they are starting to get use to the fact that it is always something with SMA, something wrong, something you need, new things to try, different challenges every single day. Some days are good and some are bad but I know god is with us each one.

I am a very happy little girl, and I am loved by so many people! I love life and being with my family. I love baby Einstein movies a lot! And any toy that talks or lights up.  Oh and I really love my sister Lindsey! I am beautiful inside and out (everyone tells me so) =). I have to fight everyday to live and a lot of times it is really tough but no one is giving up on me and pretty soon there will be a cure for me. Until there is I will just keep fighting and making everyone's heart melt with my million dollar smile!!!!  =)))))))

Update on Me - 4/2010

My name is Gracee Sadler, I have a mommy and daddy and sister named Lindsey. I have SMA but that doesnt stop me from doing normal things and living a happy life, I love movies, and books, I love being tickled and going outside. I love my family so much, I am one tough girl, I have been through alot in life but my family takes great care of me,we are waiting on the cure, but we know it will be here soon! Take a look at my pictures and send me an email if you want, God bless everyone!