Chloe P. | 2025 All Star | Connecticut Children's Foundation

Dancing through the day-to-day of a chronic illness

Dancing, specifically classical ballet, has been Chloe’s sport since kindergarten. Her diagnosis of Gitelman syndrome was a bit of a detour on her life stage, but she remains optimistic in its daily management. As much as Chloe is a committed athlete, even more so, she is a serious student in her junior year of high school, preparing for the SATs and college campus visits.

When Chloe was 12 years old, she woke up one morning with severe stomach pain. “I could barely breathe,” she remembered. Trips to Norwalk and Danbury Hospitals revealed an inflamed pancreas and very low potassium levels in her blood. From there, they decided to transfer her to Children’s in Hartford, where she spent a week undergoing tests to determine what was presenting in her young body. After all, as her mother, Elizabeth, said, “Pancreatitis is the weirdest diagnosis for any 12-year-old girl.”

The team at Connecticut Children’s made a point of keeping Chloe in the loop through all the tests.

It meant a lot to me because I had to do bloodwork three times a day, and they told me about the progress which was comforting and made me hopeful every day.”
Chloe, a Very Grateful Patient

A rare disease, but not in Chloe’s family

Chloe’s bloodwork revealed severely low potassium, which can be a very rare cause of pancreatitis. She was discharged home on potassium and other vital supplements in an effort to balance her body’s electrolytes. A few months later, Chloe’s older brother, Colin, developed severe fatigue and abdominal pain, and lab results also presented very low potassium. This brought them to meet Connecticut Children’s pediatric nephrologist, Robyn Matloff, MD. She reviewed both Chloe’s and her brother’s lab work. She suspected a rare genetic condition, Gitelman syndrome, in which the kidneys are unable to hold on to potassium and other electrolytes. It can lead to complications like severe muscle weakness and potentially dangerous heart arrhythmias.

Years earlier, Chloe’s older sister, Cameron, had been unofficially diagnosed with Gitelman syndrome. When parents are unaffected by the condition, there is only a one in four chance that they will pass on the disease to their children. “Therefore, it’s extremely rare that all three siblings would be affected,” Dr. Matloff said. Neither Chloe nor her brother showed signs of Gitelman syndrome when they were younger. Dr. Matloff ordered genetic testing that confirmed the diagnosis in all three siblings.

Gitelman syndrome requires lifelong monitoring and treatment. After a year of thrice-daily liquid potassium supplements, Chloe now takes 15 capsules of supplement per day. She keeps the capsules with her at all times and has learned to recognize when her body needs the supplement. “You can definitely feel it. One thing that happens is that I get headaches and get really tired. I know that’s a warning sign,” she said. “Having to monitor how I feel constantly every day gets hard. But you get used to it, and you know what’s best for yourself.”

Grace and determination

Chloe is now a busy 16-year-old, active in clubs and groups at her high school and church. She and her siblings continue to see Dr. Matloff and work with a dedicated nephrology dietician at Connecticut Children’s to incorporate potassium-rich foods into her diet. Chloe doesn’t let Gitelman syndrome get in the way of her passion for ballet. She dances six days a week and mentors younger ballerinas. Performing in The Nutcracker ballet production has been a highlight of the holiday season since she was five years old. Her advice for other kids living with a chronic disease is to remember that, “the process may seem hard, but there’s always going to be something worthwhile or positive waiting for you on the other side.”