Dawson, an Extraordinary Boy

What is the first question people ask when a baby is born? Boy or girl? This is how Dawson's story started. He was born a beautiful baby boy on 10/26/24, to parents Ethan and Emily Trainer. They embraced the "new parent" feeling, welcoming him into their lives.

However, the first hint that maybe something was not normal came during a routine infant screening, which suggested he might have a rare genetic disorder. After about two weeks of testing, it was confirmed that Dawson had Infantile Onset Pompe Disease, and it was causing enlargement of his heart. Needless to say, it was a whirlwind, trying to process something beyond the expected life of having a healthy child, to one where your child has been diagnosed with a rare genetic disease. However, Ethan and Emily, along with their families, are doing what needs to be done to give this little guy the best chance at life.

Dawson is currently enrolled in a clinical trial at Cincinnati Children’s Hospital, in collaboration with Duke University. He started treatment and is responding positively, with his heart returning to normal size after being severely enlarged. He continues to get infusions every two weeks (lasting for about six hours at a time) and has additional appointments which include physical therapy and cardiology. Currently, there is no cure for Pompe Disease, so Dawson will continue receiving Enzyme Replacement Therapy infusions for the rest of his life…unless a cure becomes available.

Emily and Ethan do have some resources to help cover expenses, but there are some travel/food-related costs that are not covered. If you are like me, asking “What can I do?”, here is an opportunity to make their day a little brighter. Also, continue to shower Ethan, Emily, and the Benson/Trainer families with prayers, positive energy, and love, as they cherish each day that Dawson gets to experience the moments…of just being a boy.