For our family, October holds special significance.

It’s Dwarfism Awareness Month, a time to celebrate my 9-year-old son, Everett. He has achondroplasia, the most common form of dwarfism. From our experience, dwarfism is often misrepresented and misunderstood, so I welcome every chance to share our story and hope to encourage greater understanding, acceptance, and support for individuals with dwarfism, while honoring his unique personality and spirit.

We first learned Everett has dwarfism around six weeks old. Just before we were discharged from the hospital after his birth, a pediatrician noticed some differences in the proportions of his limbs, torso, and head. That observation led us to Arkansas Children’s Hospital in Little Rock, where our week-old baby had bloodwork done and we met with doctors. Because our families had no history of dwarfism, it came as a complete surprise. In fact, about 80 percent of people born with dwarfism have average-height parents due to a spontaneous genetic mutation. The odds are about one in 26,000. As first-time parents, the experience was both overwhelming and frightening.

One important thing I want people to know is that dwarfism isn’t a disease that needs to be cured, but it can come with health complications. Many individuals face spinal stenosis, joint and leg issues, or respiratory problems that may require surgeries, therapies, or ongoing medical support.

Everett had his first MRI at just seven weeks old, and by 15 months, doctors discovered spinal compression and hydrocephalus. In August of 2017, Everett had a major surgery to decompress the area around his brainstem/spinal cord and remove a vertebrae. There wasn’t a doctor in our area with experience for this procedure so we found a neurosurgeon at Cedars Sinai in Los Angeles who had done this surgery on others with dwarfism. The surgery was a great success!

Going under anesthesia for people with dwarfism is more risky due to narrow airways so it requires an anesthesiologist with more extensive knowledge and experience.

As of today, Everett has been under anesthesia over 20 times.

From six months until the age of 6, Everett was in various types of therapy including developmental, occupational, speech, and physical. There were seasons when we had 7-8 hours of therapy a week. He sat up, army crawled, walked, and met other physical milestones later than average, but was farther ahead with speech and intelligence.

Around 10 months, we also discovered that Everett had developed a very pronounced facial palsy. Sadly, at the time there were not any doctors we saw who could address it or give a solution. It is not something that typically comes with dwarfism, but we believe the hydrocephalus and spinal compression attributed to this.

Currently, we have regular check-ups with several doctors a year at ACHNW and are in consultation with a specialist on a facial nerve reconstruction surgery that could be in our future.

Our story also includes deep loss. In 2019, Everett’s father, Zac, passed away in a tragic accident. Everett was only three years old and doesn’t fully remember. Guiding us through that grief has been one of my greatest challenges as a mother.

Our community surrounded us with support, but my mission was always to be steady for him and create safety and consistency in the midst of uncertainty. Simple routines like breakfast together, walks, and playtime became anchors.

Alongside his various therapies, we added play therapy to help him process the traumatic event and emotions. My approach has always been the same: offer honesty, model resilience, and remind him that we are strong, we can do hard things, and we are never alone.

I strive to keep his dad’s memory alive with special books I made, pictures in our home and a lasting relationship with Zac’s parents.

In 2022, I met an incredible man, Erik Hansen, and we married the following year. Erik’s daughter, Adalynn, is just six months older than Everett, and together our blended family has grown with the recent addition of their baby brother, Clark.

At this age, we strive to empower Everett with independence while making sure he has the tools he needs. Erik is a custom home builder and together we brought one of my dreams to life.

We renovated our own home this past year and designed a bathroom for Everett with lower counters, plumbing fixtures, and light switches. The entire space is his own. We have stools placed throughout our house, the microwave and low drawers in the island with kids plates and cups so he can reach what he needs.

I also registered our car for an accessible parking pass to give him more confidence when longer walks are difficult due to fatigue or additional leg/back aches.

At school, I communicate with the teachers and administration to have a 504 plan in place and give them information to help Everett succeed. I made it a mission to attend every class field trip, party, and be involved so I can be there to provide extra support.

We encourage him to do things himself and celebrate his growing independence, but make sure he knows we are there when he needs us.

In May 2024, Everett started a new daily medication designed to address some of the complications of achondroplasia. At first, the thought of a daily injection was daunting, but Everett faced it with a mix of nervousness and bravery. We created a reward system to ease the transition, and he now takes pride in his strength and positive results.

The goal isn’t to erase dwarfism, but to help him live more comfortably in a world built for average-height people and stimulate healthy, more proportionate growth to alleviate typical complications that could arise. His openness and courage through this process has been inspiring.

An important part of Dwarfism Awareness Month is reminding people that words matter. For example, we avoid the word “normal” and instead use “average” or “typical.” I am an average-height person; Everett is a person with dwarfism.

“Dwarf” is an acceptable term, but “midget” is extremely derogatory and offensive. I encourage parents not to hush their children if they ask questions in public, but to engage with kindness and openness.

More than anything, I wish people would measure success less by appearance or performance and more by character. Children with dwarfism, and all children with differences, deserve to be seen as whole, capable, and significant. He’s also shown us that milestones don’t have to follow a “typical” timeline.

Here’s what I want people to understand: Everett may have dwarfism, but it doesn’t define him.

Everett is magnetic.

He’s confident, kind, witty, and incredibly social.

He’s a team player through and through, whether he’s battling alongside friends in Super Smash Bros, building new characters with Lego, or asking strangers if they want to be Pokémon Go friends.

He’s a total “cat kid” but never misses a chance to pet a dog.

Everett adores his stuffed animals, usually carrying at least one (but often three!) wherever he goes.

He loves snuggling up for books, creating worlds with his sister, wrestling with Dad, singing to his baby brother, and savoring family movie nights with popcorn and M&M’s.

He devours graphic novels like Dog Man, Cat Kid, and The Baby-Sitters Club.

He’ll tell you science is his favorite subject, just after recess of course.

He lights up when he sees a friend, finds that long-awaited library book, or spots me walking in school for lunch with him.

When I think about the future, my greatest dream for Everett is that he continues to carry that same light forward.

He has already taught me to care less about what others think and more about what truly matters. He doesn’t look left or right to see who is watching; he just moves through the world authentically himself.

Sharing his story during Dwarfism Awareness Month is my way of celebrating not just him, but all individuals with dwarfism, reminding the world that their lives are filled with meaning, brilliance, and love.

To learn more about dwarfism, visit lpaonline.org, and follow Kelly along on Instagram @hellolionhearts.