When Angela Gansor and her husband, Steve, went in for her 20‑week scan while she was pregnant, she expected another routine appointment, especially after a normal amniocentesis. Instead, the sonogram revealed an issue with the baby’s heart, which prompted a visit to a pediatric cardiologist where a fetal echocardiogram confirmed a congenital heart defect: tetralogy of Fallot. As Angela calmly processed the news, the cardiologist asked her, “Are you okay? You’re taking this so well.” Angela explained this was so she could absorb the information she needed. She knew she would process her emotions later, but in that moment, her priority was learning how to advocate for her child. That mindset would carry her through the months and years ahead.
After Kaitlyn Gansor was born, she spent 56 days in the NICU. Despite the stress and uncertainty, the nurses often said they loved caring for Kaitlyn’s family because they brought laughter, jokes and a sense of normalcy into the unit.
Kaitlyn was eventually diagnosed with moyamoya disease at age 9, a condition whose name translates to “puff of smoke” in Japanese. One of the rarest forms of progressive cerebral vascular disorders where the main arteries supplying blood to the brain narrow, drastically reducing oxygenated blood flow. Currently, there is no cure. Over the years, she has undergone five heart catheterizations, open‑heart surgery before she was even 2 months old, and two brain surgeries involving indirect bypasses. She is now preparing for spinal fusion back surgery, since her early heart surgery made her more susceptible to scoliosis.
Before her diagnosis, Kaitlyn would have intense headaches that caused vomiting, but her parents didn’t yet know what they were witnessing. It wasn’t until she began showing more obvious neurological symptoms that they realized she had been experiencing strokes. As a result of this disease, and the intensity of the spinal fusion surgery, her orthopedist will have a neurosurgeon assist to ensure the safest surgical environment.
Through all of this, Kaitlyn has also had what she and her mom jokingly call “normal kid stuff”-a broken arm, tonsil removal and the everyday ups and downs of growing up.
Angela’s mantra has guided their family through every challenge: “Keep moving forward.” They refuse to stay stuck in fear or self‑pity. They face reality head‑on, educate themselves and rely on accurate information. She says they are fortunate to have quality medical care and a supportive community. “When you have a front‑row seat to this stuff, it’s amazing how much medicine has evolved in the last 13 years.”
She also shares practical advice for other families. She says it’s important, if and when you can, to divide appointments, insurance and logistics between caregivers, so nothing gets overlooked. When Kaitlyn needed round-the-clock care, she and her husband took shifts to make sure she was never alone.
Today, Kaitlyn is a middle schooler in Prince William County. She once practiced taekwondo and was preparing to start sparring before her moyamoya diagnosis made it unsafe to continue. Now, she and her parents are exploring new sports she can safely enjoy. Kaitlyn says she has to “be careful with pretty much everything,” but that doesn’t stop her from outshooting her brothers in basketball in the driveway. At school, she’s working with her Physical Education teacher to bring the Kids Heart Challenge to middle schoolers, turning her experience into advocacy.
Angela says Kaitlyn “takes all this stuff right on the chin, does it with grace and doesn’t get angry or upset.” She has already faced more challenges than many people do in a lifetime, and she will likely face more in the future. But she meets every one of them with strength, humor and resilience.
Katilyn is, without question, a warrior.
The Kids Heart Challenge is an American Heart Association program that teaches students heart-healthy habits, life-saving skills, and emotional well-being while raising funds to help children with special hearts.