Third annual Achalasia Awareness Night helps kids and families discover they are not alone - Children's National

The rarity of achalasia in children (one in 1 million) makes collecting statistically significant evidence about how best to treat them difficult.

It can also leave the kids who live with this condition, and the families who love them, feeling isolated as they search for support and for others who truly understand.

That's why Children's National Chief of General SurgeryMikael Petrosyan, MD, MBA, and Emeritus Chief Timothy Kane, MD, continue to host Achalasia Awareness Night every year, an evening dedicated to making sure no child with achalasia feels alone.

"We always tell families that no one walks this path alone," says Dr. Petrosyan. "The achalasia awareness event gives us the opportunity to build a community of families and care providers who can support and guide each other through the complex path of a childhood with achalasia."

Why it matters

This year's event was held in mid-September at Children's National and welcomed families from across the United States. For many of the children in attendance, it was a milestone: the first time they had ever met another person with achalasia in real life.

A child life specialist who worked with the kids described an unforgettable moment when one of the youngest kids asked if they knew whether any of the other kids in the room had achalasia. Almost instantly, another child in the room said, "Wait, you have achalasia? I have achalasia!" Soon, more kids chimed in. All of them were awed to be in a room with nine other kids who share the same disease.

The evening included a parent panel and roundtable discussion, giving families the opportunity to ask questions and connect not only with the clinical team, but also with other families who have walked a similar path. Having parents lead the discussion helped center the conversation on what matters most to patients and families, creating an open, heartfelt exchange of experiences, questions and support.

The event also helps build a growing network of support for families who might otherwise never meet another child or family who has walked in their shoes. One of the team's incredible parents, Nikki Hafner, carries that sense of community far beyond the event by overseeing a Facebook group where patients and families can stay connected throughout the year. She also helps facilitate a buddy system, connecting interested children and families with others of similar ages and, when possible, in nearby communities.

Children's National leads the way

As the leading U.S. center for treatment of children with achalasia, and specifically, the use of the innovative minimally invasive peroral endoscopic myotomy, or POEM procedure, Children's National is uniquely positioned to bring together families from across the country each year. The team, including Jill Rafie, CPN, Rebecca Chavez, FNP, and Segale Cephas, draws on their deep relationships with families who have received care to plan the event and welcome everyone to an evening of education, connection and hope.

The bottom line

The event continues to be a tremendous success, and no one says it better than some of the families who were there:

"Thanks again for a great night … Something even us parents don't understand is how amazing it was for the kids to feel like others understand what they are going through," one parent said at the event (or on social media?). "[Our son] teared up on the way home saying he for the first time felt like people got it … whether it was about the symptoms, the tips and tricks or something in between."

"You guys bringing families together is overwhelmingly impactful … it never gets old because no matter how far into this we get, the one in a million aspect makes you feel like you'll never know someone like you."