INDIANAPOLIS — The Riley Children's Foundation launched their year-end campaign Monday and you can help.
13News is proud to be part of it by telling you the stories of Riley families like the Breitbarths and their 1-year-old-son, Grant.
Doctors diagnosed Grant with a rare genetic disease after a newborn screening.
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He was actually the first baby in Indiana diagnosed with Pompe disease. In 2020, Indiana made such screenings routine at birth, and that's how they found it.
The disease affects the heart and muscles. Grant is mostly symptom-free, thanks to his infusion treatments at Riley.
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The family considers themselves lucky, even though Grant is in the hospital every week for several hours.
"I sometimes think about what it would have been like if our older son would have had Pompe disease," said Alison Breitbarth, Grant's mom. "He would not have been diagnosed on newborn screening, so if you don't have newborn screening diagnoses, your life looks very different. Your muscles are affected pretty severely especially if you have infantile Pompe like Grant does."
You can learn more about charitable donations to Riley by clicking here.
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