I'm Sarah and MOMMA to two boys......
And technically, one of those boys has four legs and floppy ears. The other one is a very handsome and charming little boy who was born in May 2011 with Pompe Disease. He was diagnosed at 13 days and began treatment immediately at Children's Mercy Hospital in Kansas City. Since his treatment began we have seen significant changes, primarily in his heart, and he's making great strides in reaching his milestones! He also battled bacterial meningitis summer 2011 and over came a brain abscess with some complications but each day he gets a little bit stronger and no matter the challenges he faces, he is always happy!!
A year later, a year old and going strong, we are about to start a new journey with new enzyme replacement treatment. This was quite a shock considering we thought Bruce would be on Myozyme until he was an adult and would start the adult version called, Lumizyme.
Well, as with everything, life changes and he will start the the adult version at one year of age....which is now.
And so the story continues!
