February is ‘Rare Disease Month’ and it is estimated that 1 out of every 28,000 babies is born with a disease known as Pompe Disease. It is so rare that both parents must be carriers of the mutated gene for their child to be affected. Indiana is just one of 13 states which screen for Pompe Disease on newborn screening tests.

2-year-old Grant Breitbarth is the first child to be diagnosed in Indiana from the newborn screen. Now, his mom is on a mission to get funding, raise awareness and encourage all 50 states to include Pompe Disease on their newborn screen tests.

Alison Breitbarth joined FOX59 this morning with her son, Grant, to talk about Pompe Disease and how it’s affected her family.

For more information on grant’s giants, click here.