I won’t apologize for having 3 children with Duchenne MD

I have always been an open book about my life.

I am a writer, caregiver, and mother living in the Midwest with my family. My husband and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD).

I openly share my family and our story on social media. I write from the perspective of a caregiver to sons with DMD, a mother to children with a rare disease, a mother to a large family, and a woman of faith. I do this to raise awareness about DMD and show what our life looks like with seven children.

I share on social media, much like I share in this column. I write honestly about the challenges of having three sons with Duchenne, but my focus is on my family, not on the disease. I share the things we laugh about, believe in, and find beautiful. I hope to demonstrate that while Duchenne makes life harder, we still have a good life. We are happy and have an abundance of love that continues to grow.

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No apologies

I recently posted a reel that featured two photos — one of my husband and sons standing together a decade ago, and another of my husband, me, and our four sons in a family picture taken last summer. In the second photo, Max, Rowen, and Charlie were in their wheelchairs. I included a caption that read, “We have three sons living with Duchenne muscular dystrophy. Their muscles are slowly deteriorating over time.”

The reel has received more attention than many of my posts, with tens of thousands more views than usual. Strangers commented. Most were positive and kind, but some were cruel. One criticized me for having three children with DMD. I deleted it, but I’ve continued to think about it.

Unfortunately, it’s not the first time I’ve received a comment like that. For the most part, people who follow me are supportive — many are part of the DMD community, local friends, or rare disease supporters. But when one of my posts gets more traction, or when an article about my family runs in a newspaper or magazine, there are always comments like that one.

I really wanted to reply, to defend myself and my family, but I did not. It might have led to an online debate, but it wouldn’t have changed anyone’s beliefs and would have just upset me.

I won’t apologize for my children. They are, and always will be, the most beautiful thing I’ve ever done in my life.

My sons are all very close in age. I was already pregnant with Charlie when Max was diagnosed. We did not know three of our sons would have DMD when we started our family, but that did not change the way we felt about our children.

My husband and I, and all of our children, believe in the sanctity and value of every human life, including those with DMD. Weak muscles, the use of mobility aids like a wheelchair, or the diagnosis of a rare disease do not diminish the value of my sons’ lives.

My sons with DMD are young men who are going to school, developing skills they can use in the future, and dreaming of jobs and independence, like all young people their age.

My sons are happy. They have a family they love, and who loves them. They have faith, a church community, and neighbors they spend every Fourth of July with. They enjoy swimming, hanging out with family pets, playing video games, watching movies, reading books, playing musical instruments, watching football, and watching WWE wrestling.

Having a rare disease or needing to use a power wheelchair does not make them less human or less deserving of being here. Their lives are valuable, as are all human lives.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.