‘It’s a huge concern’: Families of kids with complex medical needs worry about frequent measles outbreaks
Meghan HolohanToday at 8:52 a.m.
Childhood Vaccines
Measles
Public Health
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].”
More kindergarteners skipping measles vaccine
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.I don’t think people are educated about the broader concerns for herd immunity.
Maggie Gladson
The data back up their concerns. In August, the Centers for Disease Control and Prevention (CDC) reported that more kindergarten students received at least one vaccine exemption for the 2025-26 school year, increasing from 3.6% to 4.2%.
Of all kindergarteners, only 92.4% received their measles, mumps, and rubella (MMR) vaccine, lower than the 95% coverage needed for herd immunity. This type of immunity—which happens when enough of the population has natural or vaccine-induced immunity to a virus—protects vulnerable people such as children with complex medical conditions.
Violette Schadtle, 5, was born at 32 weeks and had a stroke at birth. Since then, she’s been diagnosed as having an HNRNPU gene deletion, a rare disease that causes seizures, global developmental delays, and a brain-based visual impairment that makes her vision look like a kaleidoscope. Violette is up to date on her vaccines, but she still becomes sicker than other children when she contracts a virus.
“Violette had RSV once, and it was absolutely miserable,” mom Courtney Schadtle, of Lewiston, Maine, said, referring to respiratory syncytial virus. “It took a lot out of her. It took a lot out of us, and I definitely don’t want to do that again.”
While the family took turns sitting in the bathroom with a hot shower running in the hopes the steam would loosen Violette’s congestion, she experienced breakthrough seizures. Normally, her medication controls them, but when she becomes sick, they return.
“It is extremely scary and very overwhelming,” Courtney Schadtle said. “I always break down and cry myself and I hold her for hours after she’s sleeping because I just don’t want to let her go.” As measles outbreaks have become more common, she decided to homeschool Violette to protect her.
“We don’t want to risk her getting [a virus], because who knows what that could be for her?” she said. “That could be something mild, or it could mean ending up in the hospital.”
Impaired immune system means vulnerability
In rural Klukwan, Alaska, Maggie Hotch worries about the increase of vaccine-preventable illnesses affecting her son David, 15. There are so few doctors in the area that if David catches a virus and becomes seriously ill, the family will struggle to find him care.
“There’s only one clinic that we can choose,” she said. “We don’t have complex–medical-care pediatricians here in our area.”
David was born with mucopolysaccharidosis type 1, a rare genetic disorder characterized by a lack of enzyme to break down carbohydrates. This causes mucopolysaccharides (long carbohydrate chains in cells) to accumulate in every system of his body. It can lead to skeletal dysplasia, a bone disorder, which has led to 18 orthopedic surgeries for David.
[It’s] like, ‘Well, you were weaker to start with, so you didn’t matter in the first place.
Maggie Hotch
To prevent the build-up of mucopolysaccharides from affecting his brain and causing cognitive and developmental delays, David received a bone marrow transplant when he was 18 months old. The transplant also allows the synthetic enzyme that he takes to cross the blood-brain barrier. But it also means that David’s immune system was weakened for many years.
“He basically had to repeat all of his vaccines over again, because he got a brand-new immune system,” Maggie Hotch explained. “That was very scary.”
Even though they live in a small village, visitors from cruise ships bring viruses to their community. COVID-19 cases reliably climb every spring and fall as tourist activity flourishes. The family often flies to Seattle so David can visit his specialists, which can be dangerous, because measles exposures frequently occur in airports.
“If you’ve put your kid through a bone marrow transplant, you’re not going to mess around with measles—or anything else,” Maggie Hotch said. “The high un-vaccination rate really does become scary. We’ve had mumps in Alaska for about a decade now; that goes around, and meningitis. There’s just so many preventable diseases that people are getting now, and it’s a huge concern.”
Worries over measles at school
The three families all participate in Little Lobbyists, a family-led organization that started in 2017 to lobby against the repeal of the Affordable Care Act. Since then, the group has met with members of Congress about a variety of issues, such as cuts to Medicaid.“Our big issue… is home-based community services,” Maggie Gladson said. “It’s very frightening what the future might hold for Charlie and kids like him.”
Charlie is nonverbal and “semi-mobile.” When he’s not at school, he enjoys sitting beside the nearby creek, crunching leaves in his hands. “He loves being outside,” she said. “He likes any kind of transportation, really. He likes to drive. He likes to be on the tractor.”
The family decided to send Charlie to school even though they’re worried about measles. They want him to thrive, and that involves balancing fears about his physical health with what’s best for his mental wellbeing.
“We’ve had to seriously think about ‘how do we want Charlie to live?’” Maggie Gladson said. “We went him to be able to live his best life.”
She wishes other families would think of children like Charlie when they consider vaccination. “I don’t think people are educated about the broader concerns for herd immunity,” she said. “I hope that it’s just that they aren’t educated about it, because the other option would mean that they are educated about it and still choose not to vaccinate.”
Courtney Schadtle agrees. “When you look at Violette, you can’t tell she has disabilities or any of these medical issues,” she said. “They just don’t understand the complexity and how it’s not like a typical child, where they’re just down for a couple of days.”
Violette’s a “spunky, special little girl,” who loves music, Elmo, and the Cookie Monster and once took dance lessons. When it came time for the recital, she danced a few steps and then gave up on performing. Her mother wants to enroll Violette in other group classes but wonders if it will put her daughter at risk.
“I’m going to have to take it into consideration because of the increases of measles and other respiratory viruses. What is their vaccine status?” she said. “Are those kids going to come in sick and potentially pass it on to Violette?”
David uses Legos to create stop-motion animation and is a member of the Chilkat band of Tlingit Natives. In the summer, he works at the cultural center and is learning about storytelling. “He’s very proud of his heritage,” Maggie Hotch said.
When people die of illnesses such as measles or COVID-19, some people highlight that the person had an underlying condition, but she believes that rhetoric devalues people’s lives.
“[It’s] like, ‘Well, you were weaker to start with, so you didn’t matter in the first place,’” she said.
Maggie Gladson feels the same way. “It definitely feels like there is now a real concerted effort to care less about these kids,” she said.