Caleb is special in so many ways. He brings joy and laughter to everyone in his life. The darkest of moods can be lifted with just the thought of his smile or the way he lifts his arms and belts out songs, the goofy looks he gives, the winks, hugs and kisses, and the wacky things he is always saying. God gives special children, special personalities. And when Caleb looks up at you and tells you that he is praying for you, you feel as though you have been touched by an angel.
Favorite Hobbies:
He absolutely loves singing and dancing around and just
being goofy, playing outside and riding his battery powered 4 wheeler.
Proudest Accomplishment:
Life!!! At one time, things looked very dark, but he came through the valley and flew to the top of the mountain! Since then, there has been no looking back. Nothing seems to hold this child down.
MPS Heroes:
Dr. Paul Woodard (along with all of the staff at St. Jude Children's Research Hospital). He's wonderful!!! Caleb is not just a patient to "Dr. Paul" and he has never made us feel stupid for any question we have asked. He has gone above and beyond the call of duty, holding our hand and calming our fears throughout our journey.
Words of Wisdom:
Try to look past the disease to the child. Our instincts as parents is to protect our babies, but in doing so, we sometimes don't allow them to become all that they can be.
Personal Diagnosis Experience:
Caleb was born premature and his lungs were not developed. After 2 weeks, we were finally able to take him home. Although his feet were turned in, and he did not pass his hearing test, we did not suspect anything, because an amniocentesis done during pregnancy showed negative for the common genetic diseases tested for. During Caleb's 1st year, he had multiple hospitalizations (RSV, Pneumonia, Spinal Meningitis, Respiratory Distress), but we attributed most of this to being premature. Thank God, we had an Orthopaedic Doctor who thought there was more to it, and finally referred us to a geneticist who immediately suspected MPS. One month after his 1st birthday, we got the positive diagnosis, MPS I- Hurler.
