I am a Pompe Warrior This medically complex warrior has

This medically complex warrior has numerous diagnoses one of which is Axenfeld-Rieger syndrome

Maddie traveled extensively including Iceland

Also by her side is her big brother

By her side are her Mommy and Daddy

Kirby recounts his experiences before and after the loss of his step-father

I am a Pompe Warrior This medically complex warrior hasMcKenzie Barker is a silly, spunky, sweet 8 year old girl who lives in Maine. At 6 weeks old she was diagnosed with a very rare genetic condition called infantile onset Pompe disease (IOPD), a terminal neuromuscular and lysosomal storage disorder. Treatment for IPD consists of a weekly 6 hour infusion that she will need to receive for the rest of her life as well as therapies year round and many doctor appointments. Although this isnt a cure, the