September is Chiari Awareness Month—a time to shine a light on a condition that has forever changed our family’s life. This is our story, and why I believe sharing it can help others.
The Early Signs No One Saw
Kirk was symptomatic even in utero. As a new mom, I trusted the professionals around me, but deep down I knew something wasn’t right.
For over three years, I took him to countless doctors. He had symptoms—real, frightening, and undeniable symptoms—but I was constantly dismissed. I was told it was “just growing pains.” I was told he was “faking it for attention.” I was brushed off as a first-time mom who worried too much.
But what was happening to my fun-loving, energetic little boy was no phase. He was losing his vision, until all he could see were purple dots. He lost bladder and bowel control. He lost feeling in his arms and legs to the point he couldn’t walk unassisted or even hold utensils. And there were other symptoms too devastating to even put into words here.
My bouncing, playful toddler was reduced to a shell of himself. And still—we had no answers.
The Diagnosis That Changed Everything
It wasn’t until a doctor finally agreed to order an MRI that we discovered the truth: Kirk had a 17mm herniation caused by Chiari Malformation.
I’ll never forget that appointment. The doctor told me she had consulted local pediatric specialists, but none of them knew how to stop the progression. She told me it was unlikely Kirk would survive another two weeks given his state at the time.
Nothing puts a mama into action faster than being told she’s going to lose her child.
Fighting for Hope
I refused to accept defeat. I researched, I made phone calls, and I found a pediatric neurosurgeon who not only understood Chiari but had successfully completed surgeries that improved symptoms. That’s when our Chiari journey truly began.
But along the way, I learned something heartbreaking: our local medical experts had failed us. Many didn’t even know what Chiari was. Some Googled it during our appointments, pretending to be experts in a condition that was stealing my child’s life.
So I came up with a list of questions—hard questions—to separate the truly knowledgeable doctors from those who would have done more harm than good just to add another surgery to their CV.
Turning Pain Into Purpose
Over the next several years, by telling our story, I helped 19 other families get their children diagnosed with Chiari. I gave them the words, the confidence, and the persistence they needed to push their doctors to order an MRI.
That’s why I share our story now—not to cast blame, and certainly not to brag, but because it is proof: we need to do better.
What We Can All Do
💜 Doctors: Please stop pretending you know what you don’t. Put aside the ego. Join the team. Work with parents to find the real answers.
💜 Parents: Trust your instincts. If something feels wrong, keep pushing. Get another opinion. Go outside your circle if you have to—we went from Florida all the way to Delaware.
💜 Families: Be a source of support. Stand with those who are struggling to find answers. Sometimes a listening ear and encouragement to keep fighting is everything.
💜 Everyone: Tell your story. You never know who it might help. Just by sharing ours, we’ve helped nearly 20 families find answers for their children.
Why Awareness Matters
Chiari is often misunderstood. It’s overlooked, dismissed, and underdiagnosed. My son’s journey is living proof that we need more education, more awareness, and more empathy from the medical community.
No parent should ever have to watch their child fade away while being told it’s “just growing pains.”
So during Chiari Awareness Month—and every month—I’ll keep telling our story. Because one story can change everything. And maybe, just maybe, it will save another child the way it saved mine.
💟 To all the Chiari warriors, families, and caregivers: You are not alone. Keep fighting. Keep telling your stories. Together, we can make a difference.