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Tommy & Kaitlyn 
Welcome to my childrens webpage. We created this page to inform our family and friends about their progress.
Tommy was diagnosed with Hurler Syndrome in May 1998, at the age of 15 months. He underwent a bone marrow transplant at Fairview University in Minneapolis, Minnesota in January 1999. His sister, Kirstin, was his donor. Tommy's engraftment is only 15%. Although its low his body is producing the enzyme he was born without.Tommy has many medical issues but continues to amaze us each day. My daughter, Kaitlyn is 6 months old and will be having an unrelated cord blood transplant this November at Fairview University in Minnesota. I had prenatual testing done with Kaitlyn. We were told she was UNAFFECTED with Hurlers. On April 22, 2003 we receive a call telling us she was AFFECTED with Hurlers. Talk about being in shock, thats an understatement. Our decision to save her life is happening now. Our lives are forever changed. My motto has always been "Remember Yesterday, Dream about Tommorrow and Live Today"...
Journal
Wednesday, August 6, 2008 10:21 AM CDT Wow finally an update....Don't even know where to begin..
Tommy turned 11 this past Feb. and has recoved great from his spine surgery. Does'nt wear the brace anymore and walks and run...He will be repeating the 3rd grade again because he missed half a year last year due to his spine surgery. He is still my little man...Only 3 ft tall but he loves life like no other.He would rather stay inside the heat gets to him..He is still on 2 heart meds.. Same ones for the past 10 years...He gets winded when he walks alot so if we go anywhere that has alot of walking we take his wheelchair and he is okay with that...
Miss Kaitlyn turned 5 this past April...I am speechless when it comes to her. She does'nt look like she has Hurlers is what all her Drs. say. She is going into mainstream Kindergarden...She is doing awesome...I have to remind myself that she has Hurlers...We have'nt told her she is different and has something wrong with her. She acts,talks like a 5 yr. old princess..I do know she will have total hip replacement on both hips and staples in the kness real soon. I can't even imagine doing this on her but i know we have too. We will travel back to Minnesota and let Dr. Schwender do this real soon. She is so different than Tommy.
My oldest Kirstin will start high school this August...A freshman...She will be going to from a catholic middle school to public high school. She is a beautiful young lady and everyone tells us to watch out...
I will try and update more...Coming here brings back memories some good some bad...Just recently I read about 2 other MPS1 kids that earned their angel wings...Cade and Suzzanh...these kids were so young...
Read Journal History
Links: http://smilequilt.com/tommyr.html Tommy's Quilt
http://smilequilt.com/kaitlynr.html Kaitlyn's Quilt
http://mighty-max.com A little boy with Hurlers
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