Mila and Mack (A Twin with a Rare Neuromuscular Condition)

After months of searching for answers, Alyssa Herrera and Tony, her husband, learned that their twins, Mack and Mila, have CNTNAP1-related disorder, an ultra-rare neuromuscular condition with only about 40 known cases worldwide. The twins are the only reported cases with their specific genetic variant. Although their motor skills are affected, Mack and Mila’s cognition, curiosity, and social connection are thriving. Through intensive therapy, laughter, and love, they continue to defy expectations while helping doctors better understand what may be possible for children with this condition. In this interview, Alyssa shares how One Inch at a Time book grew from late-night reflections into the Inch by Inch mission, supporting medically complex children and their families through awareness, community, and access to vital resources. To learn more about Mack and Mila’s story, please visit: https://inchbyinchstory.com/story Connect with Alyssa Herrera at:   / inchbyinchstory