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

Tuesday, October 28, 2008 8:33 AM CDT

I added some new photos....

Everyone is doing good...The kids just finished up the 1st 9 weeks in school...Waiting on report cards...From what my oldest, Kirstin tells me is she made the A/B honor roll. She is a freshman this year taking all Honor classes and one AP college class. I am proud of her...Tommy is in the 3rd grade and Miss Kaitlyn in mainstream kindergarden...She is reading books that have 5 to 6 words in a sentence..She can spell words that have 3 to 4 letters..Count by 10's...I would of never thought in a million years she would be doing as great as she is...Her teacher has to test her every 6 weeks and her last test she scored n 98% out of 100%..Which means she only has 2% of kids her age smarter than her. Also she scored in the TOP 5% of her class. Way to go Miss Kaitlyn...Also I am in the midst of scheduling out annual trip back to Minnesota...I would love for everyone to sign the guestbook so I know would checks in on us...Have a Happy Halloween....Love Susan

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

E-mail Author: jagators2424@yahoo.com

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