Sean came into this world a happy, healthy, and easy going baby. He lived each day to its fullest with an unbridled passion for life. He loved and cherished his family and friends above all else. He enjoyed his stuffed animals, LEGOs, batman, dinosaurs, sharks, trains, trucks and soldiers. He could play for hours on end by himself creating imaginary stories in his sandbox. He was such a smart, caring and funny little boy that it was hard to believe he was only seven.
Three weeks into 1st grade, on September 25, 2012, Sean came home early from school with a fever. Over the next few days and several doctor and ER visits later, his fever was uncontrollable and soared to 105 degrees. He was intubated and choppered to The Children's Hospital of Philadelphia in septic shock and multi-organ system failure. There, he sustained several heart attacks and was placed on VA ECMO (external heart/lung machine, life support for two weeks) and dialysis. A rare and aggressive autoimmune disorder called Hemophagocytic Lymphohistiocytosis (HLH) was the official diagnosis. His tiny little body was completely ravaged by the disease. He was swollen and blistered beyond recognition and his limbs were all black. He was started on chemotherapy and high does steroids in addition to his many other life saving drugs.
There was significant improvement in Sean's condition once on this therapy, but the road was very bumpy. Sean had several significant procedures: to his chest, lungs and heart as well as, bilateral below the knee amputations and 9 fingers amputated. Every day was filled with visits from doctors, PT, OT, speech, new tests, medication changes, and "road trips" to MRI, CT, Interventional Radiology and the Hyperbaric Chamber just to name a few.
When he was awake Sean tried to smile, tried to talk and never complained once. He cried only three times, twice for his legs and the third time was in his final days...he wanted to go home. After 100 days of fighting a good fight, his tiny, frail and damaged body could not keep up with Sean's big, beautiful spirit. Sean went to his ultimate Home with Our Lord, on January 6, 2013.
The care we received at The Children's Hospital of Philadelphia is unparalleled. Every single person that took care of Sean did it with an amazing balance of top notch expertise and the most tender compassion. They loved and cared for us like family.
Every single dollar donated and raised on Sean's page will go directly to HLH Research at CHOP. HLH is not a known disease like many other childhood diseases, there are no NIH grants, there are no celebrities or giant organizations funding research, and yet so many children are dying from this under diagnosed and fatal disease. Please help me make a difference, every little bit helps!!!