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By Zach Giordano | video by Sam Crimmins
| May 9, 2018
Bright as a lemon and graceful as a dancer, a fish swims up and around some purple coral.
On the other side of the glass, a young girl stares wide-eyed at the colors and creatures in the tank, watching her favorite yellow fish and giggling as it glides through all the bubbles.
“Come on, Nina,” says Caitlin, a teaching assistant at the Kennedy Day School at Franciscan Children’s. “We have to get to class now. We’ll come back to the fish tank after.” Nina takes Caitlin’s hand, her gaze lingering on the tank as they walk away.
Unbeknownst to her yellow friend, Nina recently helped rescue and return it safely to its home here at the Brighton school. It’s only one of the amazing things this little girl has done in her life—and only one of the reasons she inspires everyone she meets.
A medical mystery
Nina was diagnosed with autism spectrum disorder at the young age of 17 months. During that first year and a half, her mother, Sam, had noticed certain behaviors, especially considering Nina wasn’t hitting the same developmental milestones as her older brother.
“I know it’s discouraged to directly compare your children, but around six months old, she still wasn’t sitting up,” says Sam, “and even after one year she wasn’t babbling like I know most babies do at that age.”
By the time Nina had completed her early intervention therapy for speech, it was determined she had seven out of the eight signs for the autism spectrum disorder, including pervasive developmental delays not otherwise specified (PDD-NOS). This diagnosis, however, was only one small piece in a much larger medical puzzle.
Two years later, when Nina was in the car with her mom and brother, she had her first seizure. After an initial evaluation at Boston Children’s Hospital, they sent her home with medication. But her seizures continued—and only got worse.
On June 1, 2012, four months shy of her fourth birthday, Nina suffered cluster seizures at home that forced her to return to Boston Children’s. Doctors were unable to pull her out of it, so they had no other option than to put her into a medically induced coma.
“Honestly, the whole staff was enthralled by the fact that this child, who at the exact age of three and a half, developed these life-threatening seizures where she would actually stop breathing,” says Sam.
After further testing and blood work, doctors said they believed Nina had Angelman syndrome, a very rare condition that falls within the autism spectrum.
Children with Angelman syndrome rarely ever speak and start having seizures at three and a half years old. Nina fit the bill. She even had the specific physical features, like a particular spacing of the teeth, but doctors couldn’t help but remain unsure. While children with Angelman syndrome do have seizures, they shouldn’t be as life threatening as Nina’s continued to be.
Over the next three years, with the help of medication, Nina lived seizure-free. She grew to be a joyful, loving, and funny little girl who marveled at the world around her.
“I call her Baby Girl Butterfly,” says Sam. “The first time I ever saw her move so quickly, and the first time I ever heard her belly laugh, was when she was chasing a butterfly around the yard. It showed me how light as air her spirit truly is.”
But, it turned out, she was not in the clear. At age 8, during what was meant to be Nina’s first week of school, she became wobbly on her feet and kept falling over. She was vomiting constantly.
Back at the hospital, all kinds of specialists worked to determine what would cause these new and worsening symptoms. They discovered a golf-ball-sized growth on the side of her neck, and she was losing consciousness every three minutes.
“As a parent, to see your child in the hospital like that with doctors saying they don’t know what’s going on with her, it’s so incredibly heartbreaking,” says Sam.
Finally, an answer did come.
Nina was losing consciousness because she constantly, and involuntarily, held her breath. This major clue, along with the many other symptoms doctors witnessed up to this point, led them to a final, more confident diagnosis: Pitt-Hopkins syndrome.
Throughout her life, Sam always knew Nina was special, but this confirmed just how special: Nina is only one of the 500 known cases of Pitt-Hopkins syndrome in the world.
After answers, an education
Sam and Nina found the Kennedy Day School at Franciscan Children’s right when they were supposed to. After Nina’s diagnosis, her parents were encouraged to find a special education facility with dedicated staff who knew the difference between her loss-of-consciousness episodes and her seizures, as well as how to care for them. Kennedy Day School proved to be exactly where Nina needed to go to thrive.
“The Kennedy Day School’s fully integrated, student-centered approach and unique access to Franciscan Children’s expertise in caring for children with complex needs makes it a very special place,” says Jennifer Fexis, vice president of quality, safety, and education at Franciscan Children’s. “In addition to what our students learn in the classroom, they also receive therapies throughout the day, from physical therapy and occupational therapy to speech therapy and audiology.”
Since late 2016, Nina has made tremendous progress, especially in her communication abilities. Being non-verbal, Nina uses multiple forms of communication to speak, including limited vocal speech, sign language, and an augmentative communication app (Proloquo2Go) on her iPad.
“From the time Nina started last year to now, her progress has been unbelievable; her language just exploded,” says Caitlin, Nina’s teaching assistant. “And the best part is Nina is a model student in the classroom. She’s great at using her device, which shows the other kids who are just getting started using theirs how well it can work.”
Caitlin has worked one-on-one with Nina from the day she arrived at the Kennedy Day School (KDS), and their bond over time has strengthened by the day, it seems.
“Nina’s relationship with Miss Caitlin has grown into something I can’t explain, but am truly thankful for,” says Sam, Nina’s mother. “As a parent, we know that there is no one in this world who is going to take care of our children like us; I’ve been proven wrong.”
In November 2017, Nina and her family visited Disneyland thanks to the Make-a-Wish Foundation. After seeing how special Caitlin had become to Nina, Sam invited her to join them on the trip. They met some of Nina’s favorite characters and made memories none of them will forget.
“I’ve always known there’s a special place in heaven for teachers,” says Sam, “and even though I don’t know what the special treatment is for special ed teachers—maybe they get platinum wings or something—I know for certain that the teachers at KDS will get the best.”
The emergence of Baby Girl Butterfly
Today is a special day for Nina. A local cartoon illustrator, Jason Wiser, is going to turn her into whatever superhero she wants to be. He sits with Nina and Caitlin to learn about what Nina likes and who she is. Almost immediately, he learns things that help fill in the picture.
When asked to pick a color, Nina chooses purple. She takes the crayon in her hand and draws wide, looping scribbles over the sketch that Jason presents. This, in addition to what Caitlin tells Jason, inspires his ideas for how to depict Nina the superhero.
“She loves the fish tank,” says Caitlin. “She never gets bored of it and would stay there all day if we let her. It’s a good learning opportunity as well because it gives us a chance to describe the fishes’ colors and count them all.”
After an hour of sketching and learning a little bit more about Nina from her mom, Jason presents a preliminary sketch to Sam, complete with Nina dressed as Baby Girl Butterfly, rescuing all the fish in the Franciscan Children’s fish tank from the evil scribble monster. Sam is overjoyed, and then surprises Jason with the fact that this comic is partially based on true events.
“This is perfect because she really did save the yellow fish,” says Sam. “They removed it from the tank, and she would always look for it. Eventually, they brought it back because she wanted to see it so badly. It has a home here because of her.”
As for Nina’s costume, Sam is especially happy being reminded of one of her fondest memories.
“I think this persona encapsulates her perfectly. I’ve always said Nina is just like a butterfly: She goes wherever she pleases and pleases wherever she goes.”
To learn more about children like Nina and the services that Franciscan Children’s provides, please visit franciscanchildrens.org. For additional information about the Kennedy Day School at Franciscan Children’s or to arrange for a tour, please visit kennedydayschool.org.
Sponsored by Franciscan Children's
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