by Colleen Berlingieri Twenty-four years ago my oldest son Geordi (Geo), was born with big blue eyes, dark curly hair and chubby little cheeks that made you want to smother them in kisses. He was also born “fussy” – not wanting to sleep for more than 20 minutes at a time and not feeding well. As time went on, he was also late to sit, crawl, walk and talk. By the age of two, he […]
Myiles is 4 year’s old, he was born on September 7th 2012; 5lbs 13ounces he was beautiful. When he was 15 months old he was diagnosed with Merosin Deficient Congenital Muscular Dystrophy est: 100 patients have been diagnosed in the U.S AND 1,000 patients have been diagnosed in the U.K. He had a rough start from birth, he had water in his lungs, he was not breathing on his own, he spent 13 day’s In […]
by Amy Silverman I swear the guy smelled her coming. We had barely set foot in the lobby of The Plaza when he swept up, a slight young man in a dark suit, holding out a small bag of jelly beans. “Would you like these?” he asked Sophie in his best concierge voice. She took the bag and examined the pink and white sticker with the little girl in the iconic black jumper on it. “Where’s Eloise?” […]
by Jessica Ebersole By all medical standards, I should not be sitting here writing this piece. My life was critical and fragile from the moment I exited the womb. Thanks to wonderful doctors and medical advances, I am here today to share with you a little about what I like to call my humble beginnings. As the sun pushed over the horizon on March 14, 1992, my twin and I pushed fighting breaths out of […]
Nathan sits mostly. He has a history of epilepsy, “un-testable intelligence” and no movement from the waist down. He doesn’t lift his head to give eye contact or move unless commanded to do so. His vision is limited. He is incapable of speaking and is totally deaf. The world inside Nathan is a mystery. That is until camp happened. Nathan was twelve the first year he came to camp. We had no idea where to […]
