Connecticut Children's Connection

Ava and Isabella were born seven weeks prematurely, with Ava weighing 3 pounds, 11 ounces, and Isabella weighing 3 pounds, 5 ounces. Upon their babies’ arrival, Nina and her husband were elated to learn that Isabella was fine. But, their elation quickly turned to despair when they learned Ava was having trouble. When the doctors were unable to insert a feeding tube, they learned that Ava had a life-threatening condition that required transport to a hospital with the expertise and specialists capable of fixing the problem—Connecticut Children's.

Ariella was born with a condition known as nemaline rod myopathy, a rare muscle disorder that, in its severest forms, can be life-threatening within the first few months of life. Ariella’s symptoms included muscle weakness, breathing difficulties and swallowing dysfunction. But it was her inability to gain weight as a baby that first brought her to Connecticut Children’s at four weeks of age. At 5 months of age, Ariella underwent a feeding tube surgery followed by a muscle biopsy; it was the muscle biopsy requested by Neurology that led to her diagnosis. What is miraculous to her parents, Rachel and Charles, is that their daughter survived a very dire prognosis as a baby and today is an active 9-year-old with a bright future, thanks to the specialized care she has received at Connecticut Children’s.

Six-year-old Gavin is a Leukemia survivor who is enjoying his first year in school. He took his last dose of chemo on September 30, 2019 at the age of 4 but over the 2 and half years of treatment Gavin spent over 70 nights in the hospital, was sedated 20 times for spinal taps and chemo in his spine, had more than 60 doses of chemo in his port, two bone marrow aspirations, two blood infections, numerous platelet and blood transfusion, and more than 500 doses of oral chemo. His parents and big brother Connor, couldn’t be more excited, thankful and grateful for the love and support provided to them at Connecticut Children's.