September is Chiari Awareness month.  Each day, I am going to share one person’s journey…in their own words.  Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine.  The symptoms are unbearable, at best, and there is no cure…

Gage's mom, Tarsha, shares his journey...
Gage was born March 26,2004. He was 8lbs. 9oz. a normal pregnancy and no complications at birth. Gage was my 3rd and last child.It was not long after Gage was born that some unusual things started happening.  Gage would nurse and within minutes vomit everything he drank and after the vomiting he would go into a deep sleep to the point of not be able to wake him. We had several trips to the ER after time he would wake up and be just fine. I was labeled an overprotective mother by my pediatrician at the time. Through the first few years every milestone was delayed crawling, walking, talking. Gage was sick all the time 3-4 times a week as he got older more often at times. I can't recall the hundreds of times we were at the doctors and hospital. Gage was diagnosed with so many false diagnoses and put on several different medications every one having some sort of side effect. I pushed and pushed for a referral to some kind of specialist and my pediatricians office refused. I was "crazy" I was told he just has a low immune system. Finally when Gage turned 4 he was able to tell us that he was getting headaches and that triggered him to begin the vomiting that would last sometime hours to full days. I changed pediatricians and at my first visit we were finally referred to a specialist for his stomach. We went to Bangor and the Dr. ordered an MRI said he wanted to rule out a tumor. I though OK well this is a wasted test but we will do it, I was certain that he had something wrong with his stomach. The MRI was done and I received the news the next day that he had Chiari Malformation and needed to be referred to a Neurologist right away.
 Gage had posterior fossa decompression surgery in November of 2008. They opened his Dura and removed a vertebrae and put several bovine patches in place to reconstruct an opening for the spinal fluid to flow. We spent two weeks in the hospital and months of recovery after. Gage had speech therapy and occupational therapy as well. As time passed the vomiting episodes decreased less and less. The Chiari diagnoses changed everything for Gage and he would not be able to participate in contact sports or jump on trampolines or go on certain rides at the amusement parks and many other things that kids should be able to do. Hearing your son say I wish I was normal like other kids is the hardest thing as a parent.
Gage is now 13 and takes nightly medication and also has a few breakthrough medications as needed. Gage still gets headaches a few times a week and has episodes of fainting when he overdoes it. Gage is my hero though he has been through so much in his life and remains positive and happy and is probably the most caring person that I know. I often say I wish everyone saw the world through Gages eyes because the world would be a better place. We stay positive that Gage will not have to undergo any more surgeries in the future but with Chiari it is unknown what the future will hold. Chiari has changed all of our lives but we refuse to let it win. I hope that there is a cure found and that my son and other chiarians can live happy, healthy lives.