Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Tammy: My name is Merrill Staton and we live in a suburb of Kansas City. I just wanted to say that I can relate. I have a 2 1/2 year old son that seems to be OK at this point and my 9 month old son has Cystic Fibrosis. We spent 100 days in the NICU at Children's Mercy here in KC and while he went through 3 gut surgeries, all the while wondering if he would make it out and what we had done wrong. How could we do this to our child? We now know he is a blessing, he is home with us know and I have started using AFO's to walk. Only time will tell if they also have CMT. I have learned to look at life a different way. We too felt that we lived a positive life and lived the best way we knew how. Then you realize that your heart has a little more room. I was diagnosed at 18 when they did a surgery on my feet to transfer the tendons, but we didn't know what that meant. A geneticist at Children's Mercy actually had me get my hospital notes from my surgery for him to read and that is how we found out what it was I had. He then sent me to another doctor, who sent me to the MDA clinic here is KC. You see, the late in life diagnoses, the heartache of having something passed to your child and even the pain of multiple types of issues. I can relate and understand. Hang in there and please let me know if I can help. Today is a new day and when you wake up, you decide on what kind of day it will be. Good or bad? They are our emotions and we have to control them. Love your family. Merrill Staton Quote Link to comment Share on other sites More sharing options...
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