Megan is a very intuitive curious child. She just turned 4. She can make you laugh when all you want to do is cry. She is the bravest little girl I know.
Favorite Hobbies:
Singing anything Tim McGraw! Dancing, laughing, playing and annoying her older sister.
Proudest Accomplishment:
She is trooper when it comes to the many Doctor
appointments she has. She doesn't fight the many needles, she doesn't fight the many tests, she takes it all in stride and looks at you as if to say " I don't want it but you're gonna do it anyways, Right? "
MPS Heroes:
A Physician’s Assistant in the ER at Indian River Memorial Hospital in Vero Beach, Florida. Lisa Miller has a place in the hearts of our family members. If not for her Megan would still be undiagnosed. Her questions opened doors that before others had held shut due to lack of knowledge (through no fault of there own). She thought outside to the box and we will NEVER forget her!
Words of Wisdom:
Work like you don't need money, Love like you've never been hurt, and Dance like no one's watching. Live each day in the moment because tomorrow can change it all!!!!
Personal Diagnosis Experience:
When Megan was 6 months old we started noticing subtle changes in her appearance. Her legs were never straight, her nose looked different, and her hands were changing. We asked her pediatrician and they just said to keep an eye on her. The questions continued until she was 3 1/2. She was seen in the ER by a PA who was like a guardian angel to us. She couldn't tell us what was wrong but gave us the key to open the door to find out. At around 3 months later Megan had her first Genetics appt. with Dr. Patricia Wheeler. She had originally thought Megan had MPS type I (Scheie's) but after her urine test the pointer swung to Maroteaux-Lamy. So more tests (urine, skeletal survey, and a skin biopsy) and finally a confirmation on 28 December 2006. On to Missouri with Dr. Richard Hillman where she is currently undergoing ERT.
