Conquer Chiari Walk Across America 2014

Why do we walk?

Charities walks are such an amazing way to get people together to raise awareness and funds for research for whatever your cause may be. You get people who may not have any interest in what the cause is at the time but si...gn up because they like to participate in organized walking/running events. A lot of times those people who knew nothing of the cause walk away with new information that they may share with others. They donate and have family or friends sponsor them which goes right back to the cause. Charity events are eye openers for everyone involved. 

 Why do I walk? 

 On April 6, 2010 Connor Patrick was born at Lejeune Naval Hospital in NC. I did not get to hold him until he was 45 minutes old and stable. Connor had lost some oxygen during birth; we never got an explanation why. Once I held him all my fears melted away, for a few days at least. You see Connor was a very, very unhappy baby. We tried everything, gas drops, white noise machines, every colic remedy under the sun. His doctors told me it wasn’t him, it was me, I had post-partum depression. Who was I to argue with a doctor? What do I know? So we just tried our best to make him as happy as possible. Time passed and Connor was not hitting milestones. We had him evaluated and again, were told there was nothing wrong. Connor was still very unhappy and would cry for hours sometimes like he was in pain. I knew something was wrong, but as always, got dismissed. Time passed and things got seemingly better.

 Fast forward to May 4 2012: Connor was outside playing with his daddy and big brother while I was cooking dinner. It was warm, very warm and Connor did not want to come in. My husband, Chris carried him in doing his silent cry that we were told was just Connor being difficult, and placed him on the floor as he would any other meltdown…normally Connor would just continue to cry or walk into the living room. That day was different. I heard a plop as Connor’s body hit the ground and he started to convulse. I can’t tell you how long it was that he was down but it felt like forever. When he stopped shaking he was blue and not breathing…. I screamed for Chris to call 911 and started CPR to no avail. My husband was able to get my neighbors, one of which was a former police officer who took over CPR. I will never forget the EMTs getting there, they looked at my neighbor and looked at Connor and the one just shook his head. I remember screaming and running after them to the ambulance. The ride felt like it was taking forever. But before we were off base they said Connor was breathing. My baby was alive. He was just very out of it. We spent half the night in the hospital. CT scan, blood work and everything else was perfect. They told us it was a fluke. This would probably never happen again. Not even 24 hours later we were in the same spot. Connor had another seizure.
I had to fight with the Naval Clinic here at Cherry Point to get Connor a referral to a neurologist. They did not feel it was necessary, because you know, a 2 year old having two grand mal seizures within 24 hours is completely normal. I realized then that I have been fighting for an answer since this amazing child has been born and I will be fighting until the day that I die, so again, I fought and fought hard, but Connor was sent to an amazing neurologist who took the time to listen to me. She was the first person to ever listen to me. We had an EEG done first, it was perfect, but this doctor also agreed something was off with Connor. She ordered an MRI and weeks later we received Connor’s diagnosis. Chiari I Malformation. Well what the heck is that? I had no idea. I wasn’t even pronouncing it right for a week. From that moment on I spent every day learning about it. Finding ways to talk to others who have experience and could give me insight. During this time I came across the Conquer Chiari Foundation and through them organized a location for their walk to help raise awareness and funds for research. My first year organizing was last year, 2013, and will be going at it for the second time this year. This year’s walk will be held again in Emerald Isle, NC on Saturday September 20th.

 What we need.

 As of now I am looking for people willing to volunteer their time with setting up the walk. I am in the process of getting corporate sponsors, so if you have a business and would like to sponsor us, that would be amazing (and a tax write off for you.) We are also in need of door prizes, bottled water donations and things of that nature.   

 If interested, please email
Jodi Thomas 252-665-2770 or email JAThomas813@yahoo.com
For more on Connor:
http://www.facebook.com/ConnorVsChiari
http://youandmekid4619.blogspot.com/2013/01/to-sum-it-up.html
For more about Conquer Chiari:
http://www.conquerchiari.org/index.htmlSee More

"A mother's love is forever; time, distance, hardship...all fall before the strength of her love."