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We are Making a Difference Together
Connecticut Children’s Connection members help our physician-researchers unlock medical mysteries, not only for the patients and families in our community who depend on Connecticut Children’s, but also for grateful patients around the globe.
Meet Our All-Stars
Facing the Future with Positivity and Laughter
Meet Jackson, an eleven-year-old who loves slapstick comedy, funny books, cars and trains. Jackson was born with metachromatic leukodystrophy (MLD), a rare genetic condition that affects the central and peripheral nervous system. MLD causes a progressive decline in motor and cognitive functions, so Jackson and his family face a future filled with many unknowns. Read Jackson’s story and discover how he and his parents keep their focus set on hope, acceptance and positivity.
Strong-willed and Resilient in the Face of a Rare GI Disorder
Meet Gracyn, a seven-year-old born with a condition so rare that only about 100 kids in the U.S. are diagnosed with it each year. Chronic intestinal pseudo-obstruction (CIPO) means that the nerves and muscles in Gracyn’s intestines don’t work properly, preventing food, fluids and air from moving through her body. Although she has been hospitalized more than 20 times, Gracyn remains a spirited and spunky personality. Read more about Gracyn’s complex and remarkable care journey, as well as the challenges she continues to face.
A Quick Wit and an Infectious Laugh
Meet Declan, a six-year-old who doesn’t let a rare congenital condition dim his sense of humor or keep him from hitting new milestones. Declan was born with a small hole in his heart, known as a ventricular septal defect, and Dandy Walker syndrome. Fewer than 50,000 people in the United States have Dandy Walker syndrome, which affects the part of the brain that controls movement and balance. Read Declan’s story to learn how he and his family are overcoming the challenges of a rare illness.
A Big Problem in a Tiny Heart
When Junior was born, in the fall of 2019, he was at 27 weeks’ gestation and weighed two pounds. Most of his organs were still developing, and he faced many health challenges. But perhaps the biggest was his heart. The valve between the two major arteries, which is open while a baby is in the womb, had failed to close, and blood was going to the wrong places. Connecticut Children’s interventional cardiologists were able to use a catheter to place a tiny mesh coil—the smallest such device ever placed in the state—to close off the opening and get his heart working right. Today, Telmo is thriving, a lively, loving three-year-old.
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