Behind that amazing flying contraption is Community Stages’ brave young friend, AJ, just 10 1/2 years old. Some of you may remember that I introduced him to you in October. His journey was part of my inspiration for Community Stages.
Diagnosed with Aplastic Anemia when he was 9, his mom calls him her hero. His little sister, Madisyn, brags about how smart he is. ***
It seems like just yesterday when I heard from Stephanie. She and Tony were bringing the kids to the Big Apple for a Holiday Extravaganza. Maybe I had a few suggestions of things to do and see? Did I! I plotted a turn by turn map from Penn Station to Times Square’s Toys R’ Us, up past the tree at Rockefeller Center to the three-story Disney store, over to FAO Swartz back down to Times Square for dinner at the ESPN Zone or Mars2112 and back to Penn Station.
They didn’t make that trip because AJ was getting frequent nose bleeds and not feeling well.
Just after Christmas, he was sent to the Children’s Hospital of Philadelphia and there he stayed for months, diagnosed with Aplastic Anemia, a potentially life threatening bone marrow failure disorder. A disease so rare that it “affects two to six people per million worldwide. The disease is more prevalent in Asia than in the Western world. Most cases occur in older adults.” ~ St. Jude’s Children’s Research Hospital.
Imagine everyone’s surprise. ***
How is he doing? Right now, great. His body has responded to the drug therapies. No bone marrow match has been found for AJ, yet. However, as long as his numbers look good, he can, pretty much conduct himself like a typical 10-year-old. I had the great fortune of spending a few hours playing with and interviewing the kids. It was so much fun! I left completely exhausted and overwhelmingly inspired.
Just as his family boasted, AJ IS a hero and he IS really smart. As is his whole lovely family. Aplastic Anemia doesn’t just affect one or two people of a million. Each AA diagnosis charges countless family and friends to seek a cure and save the life of their loved one.
2011 Community Stages is partnering with AJ, his family and the Aplastic Anemia & MDS International Foundation! Together we are committed to building community, raising awareness and much needed funds. Please click here to visit our FirstGiving Page and make a donation.
Every penny counts, you can help save a life like AJ’s. As AJ said towards the end of our interview – A cold can’t kill you, but with Aplastic Anemia it can. ***
Continue to stay connected with Community Stages, a pending nonprofit that builds community through the transformative power of the performing arts. Concerts and other events will be held to support the Aplastic Anemia & MDS Foundation throughout 2011!
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