I’ll be straightforward about caregiving: It’s exhausting. I’m the mother of seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. I’m also a caregiver to Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD). You are catching me during a challenging…

Life is lived in seasons, at least here in Nebraska, where we experience all four of them. Some days offer nearly perfect weather: The sun is shining, the temperature is in the mid-70s, and I can smell the thaw of winter and feel the hope of spring. Then there…

My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start this week. A couple of weeks ago, I shared in a column that I wouldn’t…

In August, my 2-year-old son, Alfie, became a big brother. While bringing a new baby into the world is an important life event for any family, when you are already raising a child with LAMA2-related muscular dystrophy, there can be even more to contend with. For about six…

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today. If you haven’t guessed it yet, I am exhausted. I was a single caregiver and…

As new diagnostic tools and treatments help patients with Duchenne muscular dystrophy (DMD) live into adulthood, new challenges arise in areas like education, independence, personal relationships, health, and intimacy. To address the emerging needs of patients, caregivers and physicians of DMD patients, the Centers for Disease Control and…