This sussy nomination came from Danielle Alexis. Danielle started Project 3×5 to raise awareness for a disease called Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy (CRPS/RSD). The best description for this disease is through Danielle’s own words, “CRPS/RSD is widely recognized to be the most painful condition in the world, as evidenced on the McGill Pain Scale when shown to be above the pain caused by cancer, the amputation of a digit, and even childbirth. Fox News has even declared it to be 1 of the 5 craziest diseases in the world! In short, the nerves are stuck on replay from the point of the accident and so I am in almost constant, searing pain as if I have been set on fire.”
Danielle has interacted with & influenced many people through her blog at www.project3x5.tumblr.com. We got introduced through Twitter to Danielle and her amazing project. We see a lot of similarities between our blogs and our projects, so we sent her a Sussy tshirt and asked her to nominate someone who we could help make smile. She responded by telling us about Mary Claire Clark –a 16 year old girl from North Carolina suffering from CRPS/RSD.
“I know so many deserving people through the blog, but I’ve narrowed it down to the most INCREDIBLE young lady who has just left a 6-week intense Physical Therapy Program at Boston Children’s Hospital to start her senior year of high school in North Carolina.
Her name is Mary Claire, and like me, she also suffers from CRPS/RSD. Unlike myself however, she suffers from this condition in conjunction with a genetic heart condition called Brugada which (before she got a pacemaker/defibrillator) could have caused sudden cardiac death. Add to all of this, a diagnosis of Melanoma for her father in 2011 – terrifying for the family based on the fact that her mother is a 5 year breast cancer survivor. Thankfully, he has just been given a clean bill of health.
It’s a lot of stress for someone so young, and Mary Claire handles it with an incredible amount of grace. Although she originally got in touch to say that I had inspired her, there is absolutely no doubt in my mind that she inspires me a whole lot more! My God, the girl is incredible! I have no idea what I could do for her, due to the fact that she has the most amount of inner strength I’ve ever seen in someone, no matter their age.”
So we sent her this….
“I got the flowers and bear today! I was having a really rough day pain wise and was ready for the day to be over. It was so nice to walk in and see the bear and flowers!! It really made my day and gave me a second wind! I put them in my room and I smile every time I see them. Thanks for the joy!!”
We are so glad to have made your day & given you a second wind, Marie Claire. Thank you & Danielle for helping to bring awareness to this rare disease.
—-Who do you know that deserves a smile? Nominate him/her today by emailing us at firstname.lastname@example.org—-