"Our Baby Faces Life-Threatening Seizures Every Day"

In England, one-year-old Macy O'Brien suffers from a rare genetic disorder due to a missing part of her X chromosome, causing her to experience up to 40 epileptic seizures a day, and sometimes more. "On her good days, Macy might only have one or two seizures," shares her mother, Nikki, "but even then, I'm on edge. Her worst was about 46 seizures in a single day, costing my husband and me precious sleep, not to mention the fear that grips us each time it happens."

Initially, doctors suspected heat-induced convulsions—a known symptom of this specific illness. However, after a lengthy series of examinations over two months, during which Macy struggled helplessly with her inability to use her hands, she was officially diagnosed with frontal lobe epilepsy. "It's true that dealing with the seizures is tough and frightening," Nikki admits. "Yet we feel blessed with a wonderful treasure. My husband Neil and I are so grateful to have a cheerful and loving daughter like her." 

Macy O'Brien. At times, she looks like any healthy child.

Macy's breathing difficulties are so severe that at home, Nikki and Neil keep a closed-circuit television to ensure she is monitored every moment. "Nighttime is the most frightening for us," says Nikki, adding, "She might stop breathing without us hearing or choke from the vomit she sometimes regurgitates. The seizures can be so life-threatening, we simply don’t know how to help her."

With these words, Nikki turns to the global scientific-medical community with an emotional plea: "Help us save our Macy. Give her a chance at life, and do something." The doctors have tried to track the pattern of Macy's seizures, but so far, no success. Her parents are currently raising funds for a special mattress that will sound an alarm when Macy begins to seize in her sleep. "We hope to eventually purchase a device to alert us to sleep apnea, with hopes that we'll never need to use it and Macy will recover much sooner."