Daniela C. | 2025 All Star | Connecticut Children's Foundation

Powering through a rare blood disorder

It was a call no parent wants to receive, especially at 11:30 at night. Dan and Nicole were asleep. Their four children, including 14-month-old Daniela, were sleeping. On the phone, a doctor at Connecticut Children’s was telling them, “You need to get her up and we’ll be waiting at the ER for you.” After many frustrating rounds of appointments and trips to other hospitals, the mystery of why little Daniela wasn’t growing and thriving had been solved. The results of her blood tests were back, revealing that she had beta thalassemia, a rare genetic blood disorder. Her body couldn’t make the healthy red blood cells needed to carry oxygen throughout her body.

For her parents, it was heartbreaking news. “It’s hard to learn that your child is going to be at hospitals for the rest of her life,” said Dan. Treating beta thalassemia requires regular blood transfusions. Beginning with that midnight trip to Connecticut Children’s when she was barely more than a year old, Daniela has received a blood transfusion every three weeks of her life. She admits that “it’s a little overwhelming sometimes.”

Her treatment isn’t limited to the thrice-weekly transfusions, however. She has a full team of doctors at Connecticut Children’s who oversee her care. In addition to hematologist Michael Isakoff, MD, who has treated Daniela for the past 11 years, she also receives care from endocrinology, cardiology, audiology, and ophthalmology.

Lifesaving treatment with dangerous side effects

The blood transfusions Daniela receives are essential to her health, but they carry a downside, too. Repeated blood transfusions can result in dangerously high levels of iron, which can be toxic to the heart, liver, and spleen. To counter that, Daniela receives iron chelation therapy, in the form of medication, to remove some of the excess iron. Chelation therapy is not without side effects, and Daniela has suffered some hearing loss as a result of the medication. In addition, she goes to Connecticut Children’s several times a year for cardiac MRIs to monitor the degree of iron accumulation in her heart tissue. “It’s been the same ever since she was diagnosed at 14 months old,” said Dan. “We knew what those side effects would be and how we’d have to treat them."

Daniela’s got great doctors and nurses here to take care of her and follow her every step of the way. So, we’re in good hands.”
Dan, Daniela's Dad, a Very Grateful Parent

Managing school, dance, and energy

Today, Daniela is a busy 7^th grader whose favorite classes are social studies and cooking. She studies lyrical dance at a dance school in Berlin, where her mother also teaches. Her energy ebbs and flows, based on where she is in a transfusion cycle. “When I’m low on my third week, it’s harder to dance,” she said, “but then when I get my blood, it’s easier because I have more energy.” She would also like to be a nurse someday, to help kids like herself. “I know what they’re going through. I know it can be hard. I want to help them get through it.”