Teen turns chronic pain into a mission

Photo Kristin Schultz
Isabella Sementilli doesn't let a debilitating headache disorder keep her down. She bakes and sells cookies at her family's restaurant, Scotti's, and donates the proceeds to brain injury and anti-bullying causes.Photo Kristin Schultz Isabella Sementilli doesn't let a debilitating headache disorder keep her down. She bakes and sells cookies at her family's restaurant, Scotti's, and donates the proceeds to brain injury and anti-bullying causes.

BY KRISTIN SCHULTZ

Gazette Reporter

SCHENECTADY — Isabella Sementilli looks just fine. She is a petite, dark-haired 14-year-old girl with a bright, beaming smile. Silver bracelets jingle on her wrist. She loves Nancy Drew mystery novels.

Isabella Sementilli looks just fine. But in fact, she suffers from a debilitating headache disorder that keeps her from doing many of the things she used to do before an injury four years ago.

Despite her invisible disability, Isabella is determined to move forward, in part by advocating for anti-bullying and brain injury causes.

“I’m not walking around with a cast or a crutch,” Isabella said. “People say, ‘You look fine.’ But I’m not.”

In October 2013, one of Isabella’s fifth-grade classmates pulled the chair out from under her as Isabella went to sit down. Isabella fell to the floor, injuring her tailbone, back and neck and, as she and her family would find out later, suffering a concussion.

Hours after the incident, Isabella experienced blurred vision and was sensitive to light and sound.

Her mother, Pola, took Isabella to a doctor who advised Isabella take it easy, not participate in gym or dance for a week or so.

While sitting on the sidelines during gym class, a wayward basketball struck Isabella in the head, causing a second concussion and leaving her with a permanent headache disorder.

Her headaches start first thing in the morning and intensify as the day goes on. She wears sunglasses and earplugs to minimize light and noise. Her family has installed dimmer switches in all the rooms in the house.

“It feels like there’s a rope tightening all around my head,” said Isabella. She went on to say that she often experiences a stabbing pain in the back of her head as well.

Everyday activities like walking and eating are difficult, as both can cause excruciating pain. Chewing hurts and it sometimes takes Isabella more than an hour and a half to finish a meal.

“Little things are hard,” said Isabella. “I try to stay positive, but walking and taking steps hurts.”

Since her injuries, Isabella has had to make many changes. She can no longer read books — she loves Nancy Drew novels — or use any screens including computers, phones and televisions. She gave up tap dancing, which she had done since age 3. Her tennis game has also been sidelined.

Despite the massive lifestyle change (imagine your teen without his or her phone), sitting still was not an option. Isabella is moving forward, relying on her family and her faith, and putting her efforts into advocacy.

Isabella and her brother, Sonny, used to play video games. Now, the two go head to head over the Scrabble board.

“My family is so supportive,” said Isabella. “I pray and rely on my faith in God, and I’m donating to help others.”

As Isabella adjusted to life without the activities she used to enjoy, she decided to put her energy into other things. She learned how to knit.

“The dog has lots of scarves,” said Pola with a chuckle.

Isabella, whose family owns Scotti’s Restaurant on Upper Union Street, tweaked a classic Italian cookie recipe to be nut-free for the sake of her brother, who is allergic. She called them Iznettes and sells the soft, frosted and sprinkled quarter-sized cookies by the bag at the restaurant’s register. She donates all the proceeds to anti-bullying and brain injury causes.

Her efforts have been recognized by the Brain Injury Association of New York State, which named her the 2017 Youth Honoree for the Hudson Valley March On for Brain Injury. One of Isabella’s doctors referred the family to the organization, which has served as a valuable resource.

BIANYS Executive Director Eileen Reardon said: “Isabella is a leader as a youth advocate, raising awareness both of brain injury and bullying. She truly is an inspiration for so many teens who face similar situations.”

Isabella will attend the organization’s 5K run and family fun walk Aug. 26.

“I’m excited to be surrounded with supporters and hope people come to learn more about brain injury,” she said.

She will also continue to donate to anti-bullying causes.

“It was a prank that changed my whole life,” Isabella said of the chair incident. “People should try to stop bullying.”

With high school on the horizon this year, the family is waiting to learn if Isabella’s doctors think she should continue home instruction or attend Niskayuna High School.

Long-term, Isabella hopes to pursue her passions of baking and cooking.