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Our Ambassadors from Calhoun, Georgia
Greer's Story
Diagnosis: Chiari I & II (March 2018)
Scheduled to have decompression surgery on May 21, 2019 at Egleston Hospital in Atlanta, GA
Hi~ I’m Erica. I have three beautiful children including a set of three year old twins, Greer and Grey. The twins were born ten weeks premature and with that came many obstacles. Greer having the most complications made recognizing her with Chiari Type I and II more difficult. Her other diagnosis includes: Collapsed Lung, Clotting Disorder, Heart Murmur, Gastroesophageal Reflux, Developmental Delay, Feeding Difficulties, Dysphagia, Tracheomalacia, Alte, Central Sleep Apnea, Fundoplication, Hypoglycemia and Recurrent Pneumonia. Having withstood two surgeries prior with my cousin and nephew, I have some awareness about Chiari and Syringomyelia. Grey is on the schedule for an MRI as he shares in many of the same symptoms. I must admit that the newest diagnosis for my daughter, better known as “Lil Red”, has this Mama clutched with fear. Their struggles have been difficult for my four year old son, Jax. It is hard for such a young one to understand why “his babies” have so many appointments, therapies, or hospital stays and why he must be separated from his family.
My Mom sent me a bible verse as I struggle awaiting the next game plan for the twins. Proverbs 17:17 “A friend loveth at all times, and a brother is born for adversity”. This has been so true of my family’s journey with CM and is the reason that we are super excited to share in our First Annual ASAP Walk & Roll of Georgia to help find hope for a cure! 
Beau's Story
Diagnosis: Chiari Malformation I (2017)
Surgery: Decompression & C1 Laminectomy (May 2018)
Hello~ My name is Hannah. My son Beau, was diagnosed with acute migraines at the age of 2. At first he couldn’t play for days and then weeks at a time because of the neck and shoulder pain, weakness, tingling in his arms, and insomnia. In 2017, he was diagnosed with Chiari Type I at the age of four. We had never heard of Chiari before and decided to wait and watch the symptoms while trying some medications for pain, nausea and sleep. Within a year, his symptoms progressed really fast along with a growing list of symptoms. Beau’s first surgery was only days after his 5th birthday, May 2018. In between this time, my cousin, Mack, was also diagnosed and had her first surgery. As a family unit, we tried to absorb as much information as we could quickly learning that every case is unique and we need more support. My uncle (Mack’s Dad) was heavily burdened to get involved to raise awareness and help others who struggle with Chiari and Syringomyelia. So, here we are! This is our first year with The American Syringomyelia and Chiari Alliance Project, ASAP.org. I need help from all of YOU to help make ASAP Walk & Roll of Georgia’s First Annual Goal a HUGE success! We have set our first goal committed to raise $15,000 that will go towards research and life-changing services for other Chiari families.
I am happy to report to you today that since Beau’s craniectomy and C1 laminectomy, He has done exceptionally well. The headaches are occasional, but he enjoys school, family & friends, and an adventurous life of a little boy who loves anything outdoors! Since the planning of this event, it has been confirmed that my 3 yr old niece has Chiari Type 1 & 2. As this journey continues, the lack of information and treatment becomes more and more evident. I can’t wait for you to meet Beau and “Walk and Roll” for a cure with us!  
McKinsey's Story
Diagnosis: Chiari I Malformation and Syringomyelia (February 2018)
Surgery: Decompression with C1 Laminectomy (February 2018)
Hi! My name is McKinsey but most people call me Mack. I am a 15 year old Freshman at Calhoun High School in Calhoun, GA and I was diagnosed in February 2018 with Chiari I Malformation and Syringomyelia. I have always had severe headaches since I can remember. The past two years I have developed multiple symptoms relating to these conditions. Two weeks after being diagnosed I had a decompression surgery with C1 laminectomy. It's been a little over a year since my surgery and unfortunately, I am having a much slower recovery than we expected.
Before I was diagnosed I spent most of my time playing travel softball. All I have ever wanted to do was play softball. Since being diagnosed I have not been able to do what I love. Most of my friends think that since I had the surgery everything should be fine and I should be back to normal. It is extremely difficult to explain to them what I have been going through since they cannot see how I really feel. When people ask me how I am doing I usually say that I am good because it could always be worse. Honestly, it's easier to say "I am good" than to try to explain how I actually feel.
My dad felt helpless when my symptoms kept me from being me and wanted to help. Since he couldn't do anything for the pain he started thinking of ways he could help. He decided we could organize an event to raise awareness and help support research since so many people are unaware of these conditions. At this time there is no cure, but hopefully we can help to change that.
So here we are today with Calhoun's 1st Annual ASAP Walk & Roll of GA.
I need you to help us "hit a home run" in meeting our goals for Calhoun's 1st Annual ASAP Walk & Roll of GA to be held Saturday, May 18th, 2019 at the Cherokee Capital Fairgrounds in Calhoun, Georgia. |
