Connecticut Children's Blog

Eight-year-old Fifi is, in her mom’s words, a “firestorm of positivity.” Every day, she rises to the challenges of her rare disease with determination, kindness, and a knack for brightening even the darkest days. Through a clinical trial that recently concluded at Connecticut Children’s, Fifi is also part of history. Every four months for the […]

Six-year-old Jacob doesn’t walk. He runs. He’s either climbing up or jumping off of something. He has devoted a lot of time to perfecting his Spiderman impression, and it shows. “He is always on the go,” says Jacob’s mom, Rachel. “He’s so, so active.” Jacob is also living with muscular dystrophy, a rare genetic disease […]

Ashley Burkman and her husband, Matt Chella, were thrilled to welcome their twin sons Calvin and Carter into the world in May 2019. The pregnancy had been a healthy one for Ashley with no signs of anything abnormal for the babies. However, shortly after the boys’ birth at 38 weeks, doctors became concerned about Carter’s health. “Carter […]

One of the scariest parts of any health journey is the beginning: All you have are questions, and all you want are answers. Jennefer Aquavia and Paul Willis know that feeling. This past summer, their 10-year-old daughter, Morgan, starting having seizures – but not like any seizures they’d heard of before. The day they realized […]

By Kasia My daughter Skye is nine months old, and the happiest child. Like most children her age, she loves to explore her world physically. Skye will reach and touch, respond to sights and sounds, and especially enjoys playing with her four year old big brother, Julius. Without the treatment she receives from Connecticut Children’s, […]

By Missy Kelly When my daughter Eva was a baby, someone called her “Eva the Diva.” At the time, we didn’t realize how much she was going to really grow into that name. She’s strong-willed and does what she wants when she wants, but she lives a very happy life. She loves swimming, shopping, visiting […]

David Alvarez III, 18, is a typical college freshman. He’s concerned about his classes at the University of Bridgeport, where he’s pursuing a bachelor’s degree in business management; studying for tests; getting his homework done; and spending time with friends. But on top of those concerns, David makes time for regular appointments at Connecticut Children’s […]

At Connecticut Children’s, some of the top physician-researchers in the nation are doing whatever it takes to transform care for children with rare diseases. We sat down with Gyula Acsadi, MD, PhD, division head of neurology at Connecticut Children’s, to learn more about recent developments in treatments for children with rare neurological disorders. What are […]