WELCOME TO CHIARI PROJECT KIDS
WELCOME TO CHIARI PROJECT KIDS
MY INTRODUCTION
Hi everyone! I’m Sara Eberle, a #ChiariKidMum. My son was diagnosed with congenital Chiari Malformation (CM) in 2012 and, unfortunately, also had Syringomyelia throughout his entire spinal cord as a result. Luckily, my son’s medical issues were corrected through the decompression surgery.
Despite the medical procedures, my son suffered from lingering pain, which is why I joined the board of directors for The Chiari Project: To help fellow moms understand the realities of Chiari and provide ideas for support through videos and a corresponding blog.
MY KID'S DIAGNOSIS
Hi, Sara here. I’m what I call a #ChiariKidMum . I have more than 10 years of experience helping my son navigate the physical and mental toll that Chiari Malformation (CM) and Syringomyelia have on children. If there’s one main point I can share with fellow moms, it’s this: Trust your instincts.
If your child is acting out of character (suddenly biting, for instance), exploding in rage, seeking comfort from headaches, foot aches or shoulder aches, pay attention. Another red flag for Chiari (in my case) is throwing up (yes, gross, I know). I was seeking medical help for my son’s spontaneous vomiting with GI doctors when his pediatrician discovered a spinal S curve, which led to a MRI, which then led to the discovery of Chiari, the cause of the vomiting. I knew something was wrong, and I was relieved to have a DX and RX, but saddened that it was related to a brain/skull malformity.
For me, the decompression surgery was the easy part. In fact, unexpected PTSD was tougher to maneuver, including chronic pain that manifested in lots of tears and frustration. Sometimes it’s hard for kids to articulate
Chiari pain because it’s become their baseline, but they still feel off, are unable to cope and are on edge about the smallest things, like what flavor of ice cream to choose.
Patience. Extreme patience and love are required to help your son or daughter through these difficult moments, no matter how hard or no matter what other advice people are giving you to handle the disruptive situations (like, “He needs tough love!” or “Put her in a timeout!”). Lead with empathy, be a source of strength for your child and know that it will get better. I’ll talk more about resources in my next video. In the meantime, stay strong.
Learn ways to communicate and discuss and ask questions
MY INTRODUCTION
Hi everyone! I’m Sara Eberle, a #ChiariKidMum. My son was diagnosed with congenital Chiari Malformation (CM) in 2012 and, unfortunately, also had Syringomyelia throughout his entire spinal cord as a result. Luckily, my son’s medical issues were corrected through the decompression surgery. Despite the medical procedures, my son suffered from lingering pain, which is why I joined the board of directors for The Chiari Project: To help fellow moms understand the realities of Chiari and provide ideas for support through videos and a corresponding blog.
What is the Chiari Project Kids Initiative?
The Chiari Project Kids Initiative is a dedicated effort to support children and families affected by Chiari Malformation, Syringomyelia, and related neurological conditions. Through awareness, advocacy, and research, we aim to empower families, amplify children's voices, and drive progress toward better treatments and outcomes. Join us in making a difference in the lives of young ones facing these challenges.
Ask Sara a Question
Please send questions related to Chiari Project Kids and we will get back to you.
