During the transplant process; even when Katie wasn't feeling well she would flash a smile or let out a giggle. It was like she was letting us know she was ok. Katelyn has a big heart full of love and affection. She is constantly giving out hugs and kisses that no one can get enough of! She has the sweetest personality, and she makes our lives complete.
Favorite Hobbies:
Katie loves Elmo, Blues Clues, books, baby dolls, music, and playing with her big brother Caleb!
Proudest Accomplishment:
Pulling through her transplant with hardly any problems.
MPS Heroes:
Dr. Davies and the BMT team at Cincinnati Children's. They were wonderful with Katie! And of course God, without Him nothing is possible!!
Words of Wisdom:
Never take your children for granted.
Personal Diagnosis Experience:
At 10 months we took Katelyn to the doctor for bronchitis, and he noticed that something wasn't quite right... He ordered some x-rays to be done on her, and when the results came back we were told that her x-rays looked abnormal and that a possible diagnosis might be Kippel-Feil Syndrome.
We took her to a genetic specialist to have testing done and after looking Katelyn over she felt there were no signs of the Kippel-Feil Syndrome but, she would do some tests to rule out any other possibilities.
A urine sample was taken and we would have the results in a week or so. We felt good about everything after receiving a letter saying she was clear of the KFS, we then received a phone call saying we needed to come to our local clinic for a video conference with the Genetic Specialist (as she was out in Dallas, TX for the week)...Katelyn's urine test came back abnormal.
Little did we know that when we stepped foot in that office, we would be told that our little girl had something far worse than KFS. The Dr. explained that there was a chemical in her urine that should not be there and the only thing she could think that would cause it was called Mucopolysaccharidoses Type 1 (Hurler Syndrome). She told us that this was caused from a lack of an Alpha-L-iduronidase enzyme in her body. They then took a blood sample to confirm her diagnosis.
A gut wrenching two weeks later we received the positive test results. Heartbroken, we learned that our baby girl would need a combination of chemotherapy, blood transfusions and a bone marrow transplant to have a healthy life.
