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For those of you who don’t know me my name is Christine and my son’s name is Ricky (Richard G III). This journey is mostly about him. He is the reason that we are trying to raise awareness and increase education about EDS-Ehlers Danlos Syndrome. EDS is the reason that he and I struggle daily with pain.
Almost 26y ago in 1992, my son was born approximately 2.5 weeks early due to hyperemesis throughout my pregnancy. Just like my daughter, he delivered quickly. All seemed ok until his 3month check up. That started a journey of multiple diagnoses and years and years of Dr. appts, tests, therapies and medications all which continue to this day. I always called him my “noodle boy ” because he was so flexible. Which, maybe helps explain his first and second diagnoses which were torticollis and hypotonia.
I was always told when I was younger that I was flexible because I was double jointed. However, Ricky always seemed so much more flexible than I remember myself being. EDS causes problems with the collagen in the body which can lead to fragile skin, hypermobility of joints, popping out or subluxation of joints, digestive issues, venous fragility, and vascular problems as well as other difficulties.
Fast forward to 2010 when it was discovered that he had scoliosis. It was at this point that he was diagnosed with hEDS, one of his later diagnoses after ruling out Marfan Syndrome. During this year he struggled with more pain than he usually had. He ended up needing to have thoracic and lumbar fusion surgery to correct scoliosis. Two years later he was able to graduate high school at 20y.
Fast forward to 2018. Ricky will be 26 this month. He continues to live daily with chronic pain, seizures, digestive issues as well as many other challenges. His strength and courage to never give up inspire me every day! As I previously mentioned Ricky has had numerous diagnoses over the years, including Autism Spectrum disorder, ADHD, anxiety disorder, seizures, mood disorder, GERD, Sensory Integration disorder, hEDS and POTS as well as a few others which are more personal. However, since Ricky was younger I kept telling him that what he has is not who he is and that he should keep on doing his best.
May is EDS Awareness month. In honor of Ricky and myself both having birthdays this month we are trying to raise money to help assist support groups for EDS in the state of Wisconsin. Please consider making a donation.
Christine and Ricky