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Ella’s story: Two rare diseases and the NICU roller coaster ride
“Everyone tells you that the NICU is a roller coaster ride. What they don’t tell you is that it’s a customized roller coaster ride just for you. You never know what’s coming at you next,” says Carrie Shea, whose daughter Ella spent her first three months of life in Boston Children’s Hospital NICU. Today, Ella is a “remarkably normal little girl,” says Carrie. It’s quite a feat for the three-year-old who was born with GACI (generalized arterial calcification of infancy), an extremely rare condition with an 85 percent mortality rate, and diagnosed with PKU (phenylketonuria), a second rare genetic disorder, ...
Source: Thrive, Children's Hospital Boston - March 5, 2015 Category: Pediatrics Authors: Lisa Fratt Tags: Our patients’ stories Source Type: news

Whatever it takes: Fighting for Michael
Michael stood at the top of the hill, staring down at the glittering white snow. The prospect of skiing to the bottom was scary — on previous trips, he’d refused to try, worried that he would fall. But this time was different. He was ready to take a chance. Attempting to balance without using poles, he pushed himself forward and glided through the powder as his family cheered him on. By the end of the day, the 8-year-old had sailed down the slopes five times, all by himself. The accomplishment was even more meaningful for his parents, Bill and Lisa Smith, who have watched him fight to survive — and thrive — since h...
Source: Thrive, Children's Hospital Boston - November 30, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Center for Advanced Intestinal Rehabilitation Dr. Tom Jaksic G-J tube Hale Center for Families short bowel syndrome (SBS). volvulus Source Type: news