Five years ago, my first son was born.
I had no complications during pregnancy, a smooth labor, and delivered a healthy baby boy we named Ezra. Life felt perfect—until he turned four months old. He couldn’t hold his head up independently. At six months, he still couldn’t sit on his own. By ten months, he wasn’t crawling. And at one year, he made no attempt to walk.
His pediatrician grew concerned about his missed milestones and referred us to a geneticist. After months of testing, we finally had an answer: Ezra had Kleefstra Syndrome. I had never heard of this rare disorder, and I had no idea where to begin.
What is Kleefstra Syndrome?
It’s a rare genetic disorder caused by either a mutation in the EHMT1
gene or a partial deletion on chromosome 9. Symptoms vary widely but
often include intellectual disabilities, speech delays or absence, low muscle
tone (hypotonia), seizures, and potential heart or kidney defects. Many
individuals also have distinct facial features, such as a unibrow, flared nostrils,
and a protruding jaw. Some are also diagnosed with autism. Every child with KS
is different.
There’s no cure—but there is help.
Therapies are the main form of intervention: speech, occupational, physical,
and behavioral. Ezra has been in therapy for the past three and a half years.
He’ll begin behavioral therapy next month. Thanks to his hard work, he now
walks, runs, climbs stairs, eats with utensils, drinks from a cup, and
communicates many of his needs. Speech remains a challenge, but he's come so
far. His journey is just beginning, and his dad and I will walk every step with
him.
A Safe Space for Parents: Wildflower Guardians Podcast
I believe this journey—and others like it—deserves a platform. That’s why I
want to start a podcast called Wildflower Guardians. It would be a safe,
supportive space for parents of children with special needs to share stories,
ask questions, and build a community. Wildflowers symbolize resilience,
joy, and freedom—everything Ezra represents. I'm his guardian, his
protector—and so are so many others out there. Let’s talk. Let’s build
something healing.
My Experience with Special Needs
I’ve had experience with special needs through my family. My dad came from a
large adoptive family, including three brothers with different special needs. I
also had a niece with special needs. But nothing truly prepares you for raising
your own child with a disability. It’s different. It’s personal. And it changes
everything.
The Hardest Part? The Unknown.
We don't know what Ezra’s future holds. Maybe he’ll live independently one day.
Or maybe he’ll always need care. That uncertainty is incredibly hard.
My Thoughts on Regression
Regression—the loss of skills already acquired—is common in Kleefstra, but not
guaranteed. It can happen at any age. The unpredictability is scary, but we
take it one day at a time. That’s all we can do.
Want to Help Raise Awareness?
You can support the nonprofit IDefine, which funds research into
treatments and potential cures for rare genetic disorders. Buying their
merchandise helps both their mission and spreads awareness.
My Hopes for Ezra
One of my hopes was that my son would develop a friendship with someone at
school. I’m happy to say that he has a best friend at school. My other hopes
are that he can one day be independent and be able to live whatever life his
heart desires. I just want him to have true happiness.
