When Kate McLeod learned her daughter would be born with achondroplasia — a rare condition that causes dwarfism — she was terrified.
“It was a complete shock to us,” says the New Hampshire high school teacher, who, like her husband, is of average height, with no family history of small stature.
She turned to the internet for answers but felt confused and frightened by sites that were “super medical,” hard to understand, and lacking support for parents. Later, after she’d learned more about parenting someone with this condition, she decided to help other new parents by creating a website, Dwarfism Awareness, to provide practical, positive, and “not so scary” information.
She made a TikTok account, Grown to Perfection, featuring educational tips and video clips of her thriving 3-year-old daughter, Nora. Through TikTok, she responds to messages from people around the world seeking resources and guidance.
“Remembering how scared I was at the start, and knowing that I can be someone to support them is everything to me,” McLeod says.
About 1 baby out of every 20,000 to 30,000 is born with achondroplasia, with less than 50,000 people estimated to have the condition in the United States. In 80% of cases, achondroplasia is caused by a random genetic mutation, and parents are of average height. Children with achondroplasia, which is the most common cause of dwarfism, are at risk for serious physical complications, such as compression of the spinal cord and sleep apnea. But because the disease is so rare, many doctors have little experience treating patients with it.
If you have a baby with achondroplasia, you may need to become an advocate for their medical and other needs.
“Many parents are not aware of their child's diagnosis until the end of their pregnancy, are rarely referred to genetic counselors, and are left to care for a newborn and scour the internet, or social media, for information,” says Raechel Holmes, a Southern California mother of a child with achondroplasia.
After Holmes gave birth to her daughter, Raegan, 11 years ago, she joined online groups to get information about what special care she needed. Today, Holmes is a giver of information — sharing with other parents what she’s learned.
“Advocacy has become a big part of our family’s experience with achondroplasia,” Holmes says. “Much of my focus has been on stressing the importance of early, appropriate access to medical expertise. Having a qualified, knowledgeable team in place is essential.”
This can be a challenge, says Kristen DeAndrade, 40, who has achondroplasia. In February 2024, she founded the Little Legs Big Heart Foundation for those with the condition and their families, with one goal: to increase medical access.
“Pediatricians may have never treated a child with achondroplasia before, and local resources can be minimal or even nonexistent,” DeAndrade says. “Many people are still misdiagnosed, undertreated, or given outdated information.”
The United States, unlike Europe, has relatively few specialized medical centers for people with achondroplasia, says Julie Hoover-Fong, MD, director of the Greenberg Center for Skeletal Dysplasias at Johns Hopkins University. At the Greenberg Center, patients and families see not only a team of expert doctors, but often meet with Colleen Gioffreda, who is the center’s clinical operations program administrator and who has achondroplasia.
“Seeing her is huge,” Hoover-Fong says. “They can see: ‘Oh, she works in this job, she drives a car, she has kids. That’s what my child can have, too.’”
Joining the Community and Finding Role Models
Real-life role models like Gioffreda provide hope and can inspire advocacy. One way to find them is to join organizations that focus on the needs of people of small stature.
Soon after McLeod’s daughter Nora’s diagnosis, McLeod joined Little People of America, which brings together people with dwarfism and their families in nearby states for in-person events. McLeod connected with other parents from around New England and with their children, one of whom is a girl Nora’s age, living just half an hour away. The girls have become fast friends.
“The connections you make with real people in states around you are the best support you can receive,” McLeod says. “It’s so much more beneficial than anything you can read online.”
Children with achondroplasia also benefit from meeting advocates who are of average height, says DeAndrade — especially those who “demonstrate inclusion, kindness, and respect.”
Finding Your Advocacy Comfort Zone
You don’t have the time or inclination to start a website or social media page, much less run a foundation. Can you still be an achondroplasia advocate?
“Yes,” says DeAndrade. “Advocacy doesn’t have to mean starting a foundation — it starts with sharing your story.”
Some things you can do, says DeAndrade, include joining groups, connecting via social media, writing to local schools about accessibility, and talking with your pediatrician or hospital about achondroplasia education.
“There are lots of ways to become an advocate,” says Gioffreda. “If you want to start small, that's where you start, and then you can become a more forceful advocate if you want to.”
Often, advocacy involves “just getting the information out there, even if it’s just to your neighbors,” she says.
Answering Questions – and Reaping Rewards
As a teacher, McLeod’s advocacy mostly involves providing information.
“Most people don’t know about dwarfism,” she says. “So I do a lot of educating about what achondroplasia is.”
This includes putting up educational posters at the high school where she teaches and at Nora’s preschool during October, which is Dwarfism Awareness Month — or, as Nora calls it, “Nora month.”
When McLeod is out with Nora, she almost always gets questions or comments.
“Most of them are kind,” she says. “Some aren’t.”
She’s had to learn how to shut down the latter.
Sometimes, being an advocate means scattering seeds of understanding in hopes they someday will help grow new attitudes. McLeod says she frequently tells people, including her students, that the slur “midget” is harmful and to use “little person” instead. She also instructs them to educate people who use the wrong words.
“I’ll have people come up to me and say, ‘I heard someone say ‘midget’ and I corrected them,’” she says. “I find that people are really pleased with themselves and feel good about themselves, that they can spread awareness.”
For DeAndrade, the greatest reward from her advocacy work is “watching people transform.” She has seen parents become advocates and children grow into confident leaders.
“Every time someone says, 'Because of you, I felt seen,' it’s worth it,” DeAndrade says. “Advocacy can be exhausting and emotional, but it’s also deeply fulfilling.”
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Kristen Andrade, founder, Little Legs Big Heart Foundation.
Cleveland Clinic: “Achondroplasia.”
Genetic and Rare Diseases Information Center, National Institutes of Health: “Achondroplasia.”
Colleen Gioffreda, clinical operations program administrator, Greenberg Center for Skeletal Dysplasias, Johns Hopkins University.
Raechel Holmes, Southern California.
Julie Hoover-Fong, MD, director, Greenberg Center for Skeletal Dysplasias, Johns Hopkins University.
Nemours Children’s Health: “About Achondroplasia.”
University of Florida Health: “Achondroplasia.”
