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Emmie’s journey with type 1 diabetes and celiac disease

Posted on by | Patient Stories
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Emmie knows more about her own medical history than most children her age. Her journey to finding answers started when she was just 4 years old. She woke up one day looking “like I ate a bunch of blueberries or blackberries — my lips were turning blue,” explains Emmie, now 7.  Her mom, Amanda, wasted ... Read More
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DADA2: Working together to unpack a rare mystery illness

Posted on by | Patient Stories, Research
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When Vanessa was a few months old, a mysterious red, bumpy rash appeared on her arms and legs. It would go away when she was sick with a virus, then come back. Although the rash disappeared for good just before she turned 2, Vanessa became anemic and increasingly fatigued. “She was fading away, losing weight, ... Read More
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Which children in status epilepticus are most at risk?

Posted on by | Clinical, Research
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Status epilepticus, a prolonged, potentially life-threatening seizure, is epilepsy’s most severe manifestation. Patients known to have refractory status epilepticus are more likely to need ICU care if initial treatment is delayed. But what about the broader population of children who come to the emergency room in status epilepticus? Are there any early indicators to predict ... Read More
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Get a jump on potential eye conditions by having your child regularly tested

Posted on by | Health and Parenting
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It can be surprising to learn your child has an eye condition. Children don’t always outwardly show symptoms of nearsightedness, a lazy eye, or another vision problem. That’s because children are adaptive. If one of their eyes doesn’t function well, they learn to adjust with the other one, according to Dr. Ryan Gise, an ophthalmologist in ... Read More
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Breaking records and setting goals: Grant charts his own course with Bockenheimer syndrome

Posted on by | Patient Stories
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Grant Pierce has his sights on premed when he arrives at the University of Illinois this fall. He hopes to become a reconstructive surgeon and help people with injured or ill limbs enhance their mobility. Grant’s field of study is a personal one, as he’s spent his life in and out of the hospital receiving ... Read More
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Zika study reveals how infection can cause microcephaly

Posted on by | Basic/Translational, Research
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Prenatal exposure to viruses capable of infecting the fetal brain, particularly in the first trimester, can cause a range of developmental defects in the baby. The Zika epidemic in Brazil during 2015-2016 posed an extreme case, causing hundreds of babies to be born with microcephaly, or an abnormally small head. Although cases have waned significantly, ... Read More
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Studies pinpoint risk factors for complications of pediatric intestinal failure

Posted on by | Research
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Pediatric intestinal failure occurs when patients lack the amount of intestine necessary for growth and development. As advances in treatment have led to better survival rates for children with short bowel syndrome and other forms of intestinal failure, the team at Boston Children’s Center for Advanced Intestinal Rehabilitation (CAIR) is studying factors that affect quality ... Read More
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How Josie’s bad day turned into a campaign to help kids with scoliosis

Posted on by | Patient Stories
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Josephine DeFilippi (Josie) describes the day of her scoliosis diagnosis as the hardest day of her life. Right when she was looking forward to middle school, ten-year-old Josie was shocked to learn she had a condition she’d never even heard of before. On that same day, however, an unexpected gift from someone she’d never met ... Read More
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Tackling an aggressive, treatment-resistant lymphoma where it lives

Posted on by | Basic/Translational, Research
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Anaplastic large cell lymphoma, a form of non-Hodgkin lymphoma, is the most common aggressive lymphoma in children. Chemotherapy and radiation fail to cure about 30 percent of cases. When tumors are driven by the oncogene ALK — which is the case for the majority of children — kinase inhibitor drugs like crizotinib are very effective ... Read More
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