Meet Henry

“Enjoy every day. ”

Henry’s story with Duchenne Muscular Dystrophy:

Henry is a vibrant 11-year-old from St. Simons Island, Georgia, who loves to play video games, build Lego sets,  and enjoys the company of his two cats. 

However, his journey hasn't always been easy. During his infancy, his parents noticed he was missing key milestones like sitting up and crawling. While pediatricians consistently attributed these delays to his premature birth, his parents, Susan and Cliff, had strong instincts that told them otherwise. After years of persistent advocacy and testing, Henry was diagnosed with Duchenne Muscular Dystrophy at the age of three.

“When you get that diagnosis, your whole world feels like it's completely shattered,” Henry’s mother Susan explains. “I did what all parents would do. By day, we would spend time with our three year old having fun, and by night, I was just searching the internet, completely freaking out."

But the family quickly found a rhythm, refusing to let fear dictate Henry's childhood. Instead, they adopted a family motto that they live by.

“Enjoy every day,” Henry says simply. 

“Yes, DMD is what Henry has, but it’s not what he is, ” Susan adds. “We’re not given any guarantees in life. So we do fun things as a family, we go to fun places, and we enjoy every day!”

A Second Home at RDR

Four years ago, Henry, his grandmother, and his mother made the six-hour drive from St. Simons to Atlanta to join their very first clinical trial at Rare Disease Research. Traveling that far for medical appointments may easily feel overwhelming and stressful.

Instead, RDR has become their second home.

"I just like how laidback it is here," Susan says. "You're going through all this medical stuff and procedures, but everyone is really just nice. We've never met anyone we dislike."

RDR is committed to high-quality, thoughtful work- especially when it comes to patients and their personal needs. Henry experiences intense sensory sensitivities, which can make extra medical equipment and changes highly distressing. Our staff doesn’t ignore these factors, but instead,  accommodates.

To ease the anxiety of regular blood draws, the RDR staff has completely customized and adapted their routine to match Henry’s comfort zone.

“We have a whole routine. He gets to open a new toy before the blood draw. He wants me next to him so I can hold his hand, " Susan explains. "Everyone here now knows the routine, too. That’s how it’s always been, and it’s what makes him feel at ease.”

From inside jokes with his favorite coordinator to surprise toys waiting for him at visits, RDR strips away the clinical sterility of being on a trial and replaces it with genuine connections and community.

Part of the Partnership for Hope

When Henry first started the trial, he was just seven years-old. Today, he has grown almost 10 inches since his first visit. He has remained active and full of life- traveling the world, going to summer camp, and playing with his friends at school.

For families who are nervous about taking the leap into clinical trials, Henry's family views it as a vital partnership of hope, one that is actively rewriting the future of rare diseases. When Henry was first diagnosed, steroids were the only option. Today, thanks to families willing to participate in research, there are multiple approved treatments.

“Don’t hesitate to at least check into it," Susan encourages. "They (RDR staff) take your hand and lead you along. You have this whole team helping you. We need these trials because we want things to advance for our kids to be here longer and have good lives.”

For Henry, the mission remains clear and wonderfully uncomplicated. When asked what advice he has for younger kids diagnosed with DMD, the sixth-grader passes on the best wisdom he knows:

"Enjoy every day. Do what you can."