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Connor (aka Smiley Reilly) is  His birthday is March 4th and 
He has SMA type I. Connor used the NIV and the AA diet, recently underwent trach surgery.
At 3 years of age, he has beat the odds of his disease, which is recognized as the leading genetic cause of death among infants. The Reillys were told when Connor was diagnosed at four Weeks of age that the chances were against him ever seeing two candles on his birthday cake. They lit three of them on his birthday cake on March 4.
While the diagnosis is difficult, there's a point, said Karen, when "you just have to stop grieving and start living, because your child's right here right now, and you do have to live life to the fullest."
After Connor's first two years that were full of bumps in the road, the Reillys are pleased to report their youngest boy is doing better than ever now that he has his "trach" - he underwent his tracheostomy in January of 2004.
"The trach has really helped him," said Karen, gently massaging Connor's pale pink toes and smiling at the youngster.
"Last year was really a transition year for him. The whole month of January he was in the hospital," added Bill. "He's been much more stable since then."
Connor is also showing some more movement - he is able to push his fingers against a small menagerie of colorful toys hung from a microphone boom at his bedside in the den, and he can manipulate the toggle switches attached to some of his modified electronic toys to make them work. The disease does not affect brain function in Connor.
"As he gets older, we try to get more and more creative to stimulate his mind," said Karen. "He's a 3-year-old. He wants to play."
More good news from the Reilly household is that the family has been able to go on outings together more often. While getting out means starting to plan the night before, and an hour of packing Connor's equipment before leaving, it's well worth it, the Reillys say.
I'm so lucky to have two older brothers who love me so much! Tim is 2 years and 10 months older than me and Owen is only 19 months older than me! (Mommy's body is still recovering!).
It is great that we are all so close in age because we all like the same toys, books, videos and movies!
We also can wear some of the same cool clothes like batman shirts, superman shirts and then the plaid ones that Daddy makes us wear!
Well Tim is a bit taller than Owen and me and takes one size larger but we will catch up to him soon!
Tim is an early bird and usually likes to hold my hand in the morning while we watch cartoons! Owen tends to sleep in a bit later and plays with me when Tim goes off to school. Tim and Owen also like to help cut my hair each month with the buzz cutter. I love it too!
Visit Connor's Fun Run website!
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Journal
Monday, November 21, 2005 2:27 PM CST WHOO HOOO We are so excited about MJ's news today that she has been accepted to Wright State University! We couldn't be more happy and share in this joy with her!
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