Jennifer McNary is a consultant, speaker, and rare disease advocate. She is also a mother of two boys with Duchenne muscular dystrophy (DMD). In this video, Jennifer discusses her two boys, Max and Austin, and their journey with DMD as well as the some of the emerging therapies that other children with DMD can look forward to in the years to come.

Duchenne muscular dystrophy occurs in one out of every 3,600 male infants, and it’s even rarer in girls. The deadly diagnosis is due to an inherited gene mutation, although it can be caused by a random gene mutation, too.

Boys with the condition don’t produce the protein dystrophin, so their muscles are weak and can be easily damaged. Children can appear to develop slowly, and are usually diagnosed by the age of 5. Many with Duchenne rely on wheelchairs as their muscles quickly lose strength, and begin to have difficulty breathing around age 20. Many die from lung disorders within a few years after that.