Ten-year-old Frankie Knowles of Pennsylvania was diagnosed with a pilomyxoid astrocytoma when he was 6 years old. This is a rare, low-grade pediatric glioma occurring in the hypothalamic/chiasmatic region of the brain that can have a high recurrence rate and chance of spreading.
Genetic sequencing of Frankie’s tumor tissue revealed a mutation that makes his tumor prone to bleed. Frankie has survived two brain hemorrhages, first in March 2018 and again in May 2020.
The second bleed left Frankie with many complications, but he continues to work hard to overcome challenges thrown his way. Through PT, he has not only learned to walk again, but has earned an advanced green belt in karate. Through speech services, he moved beyond typing his thoughts on a communication board and regained the use of his voice.
Despite the gains he has made, difficulty managing sodium levels has persisted long after almost all other complications have stabilized. In December 2020, his sodium dropped to 130 and Frankie had two hyponatremic seizures in the middle of the night. He was hospitalized for three weeks as a team of endocrinologists struggled to stabilize his sodium levels. Since then, he has been traveling to the hospital for labs, sometimes up to three times a week.
“Upon hearing Frankie was approved for a handheld blood analyzer, we were elated,” said Frankie’s mother, Erica. “Having this [device] means significantly fewer trips to the hospital, fewer port accesses and decreased risk of infection, and more time in school or just doing things that a typical 10-year-old should be doing. And certainly we hope to never have another hyponatremic seizure.”
A sincere thank you to our donors who made it possible for Frankie’s family to better manage his diabetes insipidus and blood sodium levels at home.
We have more children like Frankie waiting for your help.