Even on weekends, Charlie Gladson, 14, grabs his backpack and wants to go to the bus stop. He loves school so much he would attend year round.   

“He thrives on the routine,” mom Maggie Gladson, of New Oxford, Pennsylvania, tells CIDRAP News. “He thrives on the challenges he gets at school.” 

Charlie has a rare disease called Cornelia de Lange syndrome, which features global medical and developmental conditions, some of them severe. His most serious medical ailment is hypoplastic left heart syndrome, in which his left ventricle is underdeveloped and doesn’t work properly. Several surgeries, though, have kept his heart pumping. Still, he’s medically fragile, and a pathogen can seriously sicken him.  

“He’ll catch a virus of unknown origin. We don’t know what it is, and he will have a reaction that sends him to the hospital for at least weeks,” Maggie Gladson said. “He has been extremely ill and has had to be resuscitated a few times due to what began as a virus.” 

Charlie, his family, and his care team stay up to date on their vaccines to protect him. As far as they know, his immune system is strong, but he always becomes sicker than others. Lately, Charlie’s parents have had to grapple with some tough choices about this school year—especially because they live close to the epicenter of a large ongoing measles outbreak that has sickened at least 731 people and led to four deaths. 

“We don’t know if his measles immunizations are still effective. We’re up to date, but we don’t know exactly what’s going on in his body,” Maggie Gladson said. “Even if he were to get measles… his reaction to it might not be the same [as another child].” 

Across the country, parents of children with complex medical conditions share similar worries as the Gladsons. They wonder if their child will catch a vaccine-preventable illness that could worsen their child’s health and developmental progress. As measles outbreaks have become more common, they now fear their children could be more susceptible to catching the highly contagious virus.