A few years ago, Gabby started to experience frequent headaches and other neurological symptoms. We visited different doctors and she received several diagnoses' from seasonal allergies to not getting enough sleep. The headaches started to affect her daily life and she got to know the school nurse very well. It was frustrating for her and for us. Finally, during the summer of 2019, we visited a pediatric neurologist to rule out migraine headaches. The doctor ordered an MRI and scheduled a time for us to review the results. A week later, the phone rang and it was the neurologist. She said that she reviewed the MRI, and said that Gabby was diagnosed with Chiari Malformation. I had to have the doctor repeat the diagnosis and have her spell it out for me because I had never heard of it before. I was relieved to have a diagnosis but I wasn't sure what we were facing, so I started to do my own research. I learned that many others including doctors did not know a lot about this condition either. I joined Chiari support groups and have learned a lifetime of information about the brain in under a year's time. I have also validated the importance of being your child's voice and advocating for what is best for them. I also learned to be confident in the decisions I am making for her in order to help her learn to live with this life long condition.
Fast forward, one year later after the diagnosis...Gabby now has a top pediatric neurosurgeon from Cornell that is treating her condition. She will undergo brain surgery in a few short weeks to help alleviate some of the symptoms she has been feeling. My intention is to alleviate these symptoms she has been feeling for a long time and to go back living and enjoying life as a 12-year-old child should! Another intention of mine is to spread awareness to others and give people an understanding of the impact this condition can have on many that suffer from this neurological condition.
As Gabby's voice and Chiari advocate, I don't pretend to be the expert of this disorder and I am the first to admit that I continue to learn about the effects it has on sufferers. For Gabby, I will continue to work toward understanding and supporting her.
I thank you for listening and I ask you to learn a little more about this condition so that together we can build a community of Chiari Awareness for Gabby and other Chiari sufferers.