Pine Brook Boy Continues to Fight Epilepsy as Second Birthday Approaches

For most, a birthday is a celebration, a day to be happy and surrounded by loved ones and rejoice in the day you came into the world. For Bruno Stillo's first birthday last year, he was celebrated and surrounded by the entire Montville community.

But this year, as the Pine Brook boy turns 2, his mother will also be reminded of what happened just after the community came together to raise money to fund the high medical costs associated with treating his illness.

Stillo suffers from Dravet Syndrome, a rare and serious form of childhood epilepsy where he breaks out into unexpected seizures, sometimes triggered by controllable factors, like changing lights or temperatures. Immediately following his birthday last June, Stillo suffered from one of these seizures and had to be hospitalized.

"In July we came to Miami to see Dr. Miller at the Ion Channel Epilepsy Program at Miami Children's Brain Institute," Stillo's mother, Jacel Delgadillo, a former Cedar Hill School teacher, said. "[Stillo] had an absence seizure so we were admitted."

Getting used to the hot Miami heat has been a challenge for Stillo, Delgadillo said.

"Miami is hard to adjust [to] as heat is a seizure trigger, but cooling vests and portable fans are with me just in case the AC doesn't work," she said. "Fluorescent lights seem to give more myoclonic jerks, but therapists usually work with [Stillo] with the lights off."

Delgadillo said Stillo was again admitted to hospitals in August and September and eventually put on a ketogenic diet. Since then, she said her little boy has been doing well, but the diet and his condition require a great deal of follow-up.

"We decided to stay in Miami until we see improvement," she said.

To support Stillo, the family has made adjustments to continue living in Miami, including Delgadillo's daughter now attending school there. The family does, however, plan to return to Montville in June to visit relatives.

As part of Stillo's condition, he is unable to hold his balance or do some of the things kids his age are typically able to do on their own.

"He just started sitting up for maybe a good 15 minutes, but sometimes the myos, or head drops, make him lose his balance," Delgadillo said. "Not crawling yet and non-verbal, but loves to babble here and there."

Whether the family is home in Pine Brook or in Miami, Delgadillo is continuing to spread awareness about her son's rare disease. She has been in contact with other mothers of children with Dravet Syndrome, one of whom helped create an informational flier (attached) with Stillo's picture.