Shortly after her birth, 3-year-old McKenzie was diagnosed with Infantile Pompe Disease, a very rare and terminal form of muscular dystrophy. As far as we know, McKenzie is the only Mainer with the disease, which means that finding doctors who have experience with treatment options can be pretty challenging.

However, McKenzie's mom Krystye says she has been beating the odds and they couldn't be prouder. She's also not alone; every August, the family packs up and heads down to Duke University in North Carolina to attend the Infantile Pompe Clinic and Conference. There, they have the opportunity to check in with specialized doctors and therapists to see how McKenzie is progressing and meet with other families battling the same rare disease.

Courtesy of Krystye Bettney

McKenzie's parents come home from the conference each year with new knowledge to teach their team here in Maine how to care for her as best they can. It also gives the family strength knowing they are not alone, despite feeling like that's the case most days.

Unfortunately, it's not cheap to attend the conference in North Carolina. For the past three years, McKenzie's parents have raised enough money to get down to Duke for the Pompe Conference. They're hoping to attend again this year by holding a bottle drive and taking donations at all the Roopers beverage and redemption centers in Oxford, Lewiston and Auburn. Anyone who wishes to donate bottles can bring them to any of the locations and ask the cashier to donate funds to McKenzie's fundraiser.

Courtesy of Krystye Bettney

There is a poster up at every location with pictures of McKenzie and some more information about her journey with Infantile Pompe Disease. For more information or to make a direct donation, call Krystye at (207) 520-8356.