Charlie's Story

After 10 years, we’d finally built our family — going to such great lengths that our second son, Charlie, was born via gestational surrogate in 2017. In other words, this boy was prayed for, desperately wanted. We thought we had our happy ending, but in 2020 we were reminded that nothing — particularly in the realm of genetic fortune — is guaranteed. Our sweet, perfect boy was diagnosed with Duchenne muscular dystrophy, the cruelest of plot twists.

Our sweet, perfect boy was diagnosed with Duchenne muscular dystrophy, the cruelest of plot twists.”

Of course, there were signs, beginning in Charlie’s first year when he missed developmental milestones. Even when Charlie’s first steps were delayed until 22 months, our pediatrician offered reassurance — but always trust a parent’s intuition. Our concerns led us to a neurologist, who shattered a beautiful summer afternoon by delivering the initial diagnosis.

Once we had a name for what we knew was not normal, we could start to fix it. We were able to enroll Charlie in a phase 3 gene therapy trial, which has offered Charlie remarkable gains in strength and function. For now, Charlie is stable, and we’re grateful. Science has made such strides for boys with Duchenne, but many questions remain — questions whose answers will determine the kind of future our son can have.

Science has made such strides for boys with Duchenne, but many questions remain — questions whose answers will determine the kind of future our son can have.”

What if Duchenne didn’t have to be something you die from, but rather live with? What if we could stop muscle damage in its tracks and solve the biochemical chaos it inflicts? What if a diagnosis didn’t mean disability — if we could give our boys a childhood that didn’t include a countdown to their last steps?

In our family, we dare to dream of a different kind of future for Charlie, one where Duchenne exists in a small, dark corner of a big, beautiful life.