Grateful in Chatter

 

BY ERICA MOURA

Photo by Jen Kozin

Krista Doyle, a 17-year-old with sparkling hazel eyes, loves to make those around her smile. “What is red, and black and white all over?” she asks, then pauses before offering the answer. “A sunburned cow!” She laughs and smiles wide, showing off the deep dimple in her left cheek. What makes the joke – and anything Krista says – unique is the medium: she uses a computer to generate speech, from jokes to daily conversation.

Right after Krista turned a year old, she was diagnosed with cerebral palsy (CP). The neurological disorder appears before birth, in infancy, or in early childhood and permanently affects body movement and muscle coordination.

The chat box, as the computer system is appropriately called, provides Krista not only with the ability and opportunity to communicate with her teachers, classmates, and family: it also helps her develop vocabulary.

Each chat box Krista uses gets her further along developmentally.  “She has a choice of keyboards. She has the phonics keyboard,” her mother Debbie explains. “So, when she says ‘a’…it’s for the sounds that go along with the letters. So it can help her sound out words.”

The boxes aren’t a simple acquisition, however. Krista’s previous insurance provider would not pay for them. “Because it wasn’t a necessity,” says her father John, sitting on the kitchen counter and shaking his head in disbelief at the Doyle’s West Somerville home. “It’s not a part of their body, per se,” Debbie further explains. For a time, the Doyles weren’t sure how they’d be able to keep Krista chatting.

The Brian Higgins Foundation was able to help.

The Foundation is a nonprofit organization based in Somerville. Its namesake, who died in 2002 at the age of 9, developed irreversible disabilities at three weeks old, the result of a mistaken prescription. An infection went untreated and left Brian handicapped, blind, mute, and unable to feed himself.

While Brian was alive, his family made an effort to give him the best life possible. Since his death, they’ve worked to honor him through the foundation, which provides services and assistance to families of children with special needs. Through scholarships, the foundation provides families the ability to afford medical equipment, summer camps, and a variety of other programming.

Alderman-at-Large Bruce Desmond, a friend of the family, encouraged the Higginses to start the nonprofit. Desmond says, “This foundation is made up of people just as amazing as Brian was and who continually look for ways to help children with special needs as well as the families of children with special needs. I am proud to be associated  with them.”

The family’s motto is to make sure every family gets as much support as they need. “Nobody is left out,” says Debbie Higgins. For the family, providing other families with the time for normalcy is important. One service the foundation offers is childcare for parents of special needs children who feel like they need a date night. “If we can help these families have a little fun and relieve some stress then it’s so worth it,” Higgins says.

Krista Doyle is just one example of someone the foundation has touched. In her case, CP has brought with it difficulty in mobility and speech, but it has not stopped her from enjoying her teenaged years. At the end of every school year, the Franciscan Hospital where Krista attends school hosts a dance. Krista attended the dance with a classmate, Cori. Krista’s parents like to tease her, asking if Cori is her boyfriend. In turn, Krista blushes and says, “MOM!” The teenaged tone of embarrassment is not lost through the chat box.

The Doyles laugh, make eye contact, and smile at one another.The aesthetic of Krista’s bedroom is equally teenaged. To get there, Krista climbs the stairs to the second floor on her knees, turns left at the top of the staircase, and enters a room covered in her favorite color, purple. Posters of Justin Bieber adorn the walls. Krita’s mom says as almost a warning before entering, “She’s got Bieber fever for sure.” Krista has a Bieber book, CDs, and even a Bieber-branded microphone. The microphone usually lies next to the small stereo on her desk. Krista picks up the microphone and lip syncs along to songs playing from the device. Other times, she will simply put the radio on and dance in her room. Either way, she is always dancing.

She’s made space on the walls for her pictures with legends and icons of the Boston sports teams including Tim Wakefield and Kevin Youkillis. When you ask Krista what she thinks about the Yankees, she immediately puts up a thumbs down to show her dislike. On her purple-covered bed is her favorite stuffed animal, Buddy the Dog. She shows Buddy off with pride and hugs him as if she were going to sleep.

An organizer is filled with Krista’s hat collection – baseball caps, hats with sports teams’ logos, and other hats she made at summer camp, the fees of which were paid for by the Brian Higgins Foundation.

Aside from families, the foundation also helps out several charitable organizations that the Higginses think Brian would support. The Best Buddies program at Somerville High School, which pairs students with developmentally disabled partners, is one example.

Ana Caldeira, a teacher at SHS and the staff member responsible for overseeing the Best Buddies Program for the last five years is grateful for the help. “They are the best,” she says. “They really support us.”

Best Buddies uses the money donated by the Foundation to help pay for buses to go on field trips (an apple picking outing is one favorite), scholarships, and for an end of the year dinner dance the program holds in April.

The foundation also donates money to the Special Olympics of Massachusetts, the Somerville Youth and Recreation, and has even built a specially-designed, wheelchair accessible park at the John F. Kennedy Elementary School called the Brian Higgins Tot Lot. Woodchips were replaced with a rubber cork ground to make it safe for children in wheelchairs and those using crutches to move around, and there are now two sets of handicap swings.

Trivia Night is the Super Bowl of the Higgins Foundation’s fundraising year. The first was held in March of 2003 with four hundred people participating, and it’s only grown since. “Every year we are just amazed at how many people come,” says Higgins. “People move on, but every year this thing just seems to get bigger and bigger.”

The idea for the event came from Desmond, who attended a similar fundraising night at Arlington Catholic High School. “When we were trying to come up with a fundraising idea for the Brian Higgins Foundation we wanted something different from a run of the mill golf tournament,” he says. “We wanted something everyone could participate in together and have some fun.The Trivia Night immediately came to mind.”

All of the money raised from Trivia Night goes to the families and organizations the Higgins Family supports. Each year, approximately 700 people attend the event, and on average it raises about $30,000. The trivia itself is not the only fundraising going on during the night: Krista Doyle says excitedly through her chat box that she will be one of the volunteers selling raffle tickets, and there will also be a silent auction.

While the Higgins family is happy the event has reached a steady pace, Debbie says she is thinking bigger for this year. “It’s the 10th year,” she says. “It would be nice to reach the $40,000 mark.”