Danica Deneault, 5, is defying the odds, walking, smiling
Danica Deneault, 5, is defying the odds, walking, smiling
NORTH PROVIDENCE - The news was devastating: Your daughter likely won't talk, walk, eat, breathe or see on her own.
"What do you mean?" Erik Deneault remembers asking when he heard the news that his weeks-old daughter was destined for such a life. "Those are basic human rights."
Not long after entering this world, Danica Deneault, now age 5, was diagnosed with the extremely rare Aicardi Syndrome, where the structure that connects the left and right sides of the brain is partly or completely missing.
Experts say there are fewer than 900 girls in the world diagnosed with Aicardi, which mostly affects females, and Danica Deneault may be the only girl in Rhode Island who has the syndrome. Danica "is the statistic" here, said her father.
Medical professionals say that nearly 95 percent of girls with Aicardi will never walk, talk or eat on their own. There is also a high probability of blindness during a life that doesn't typically last more than five to seven years. Very few girls diagnosed with the syndrome live to reach their 20s and even fewer reach their 30s.
But Danica is walking, eating, smiling, even communicating with those around her, prompting parents of other children with Aicardi across the country to call the Deneaults to find out their secret.
The Deneaults say they don't know all the reasons for their daughter's success to date, but they credit the offerings of the Meeting Street School in Providence, along with a willingness to try any treatment or therapy available, for much of it.
"Too many people fear that there is no hope for their daughters, but that hasn't been our approach," said Erik Deneault. "Danica keeps surprising us; every week she comes home from Meeting Street (School) able to do something new."
Deneault said Danica's progress has also surprised and impressed the team of neurologists at Hasbro Children's Hospital who have been treating her for years.
Erik and Dawn Deneault, of North Providence, can't say enough about the Meeting Street School's Early Intervention Program, which Danica has been enrolled in since she was three months old. This year, she'll enter kindergarten at the school.
The Deneaults say those who work with Danica at the school have given her "every chance at leading a normal life," making her one of an "extremely small handful of girls" in the whole world who have made developmental progress instead of regressing.
Danica has benefited from nearly every intervention or therapy program Meeting Street offers, said her parents, including occupational, vision, swim, speech and physical therapy.
Though Danica doesn't speak, she walks unassisted and she can also breath and swallow without help.
The Deneaults recently returned from a national conference on Aicardi Syndrome, where they met 150 families like their own. Only six of the girls represented at that conference are able to walk unassisted.
Danica is doing far better than he or his wife ever expected, said Erik Deneault.
At this point, Aicardi Syndrome comes with a multitude of unknowns, said the Deneaults. There is a team of doctors at Baylor University studying Aicardi and other rare epilepsy-related syndromes, but every test is expensive and research dollars are limited.
The most anyone can hope for at this point is to treat the symptoms of the syndrome, said Deneault, as Aicardi is based on an issue with chromosomes turning from male to female. There is DNA editing, he said, but it's "ridiculously expensive" and can't completely reverse all of a child's disabilities.
Doctors are making gains in treating seizures from Aicardi, said Deneault. His daughter has experienced a dramatic drop-off in seizures from a peak of about 50 a day, he said.
The Deneaults are closing in on obtaining a medical marijuana card for Danica. Dramatically modified in liquid form, marijuana treatments have proven to reduce the number of seizures in patients.
Erik Deneault is a financial adviser for Santander Bank, and his wife has the job of staying home with Danica and their other two children, Gianna and Dylan.
Danica's four family members say life with her has been far more fulfilling than they ever imagined. She has taught them things they never would have otherwise learned, they said. Though she can't speak, her mannerisms and facial expressions clue them in on what she is thinking.
"I don't think any of us knew anything about dealing with a special needs child, how it impacts someone's life," said Erik Deneault.
Dawn Deneault, an "amazing caretaker" for Danica according to her husband, said having her as part of the family has taught her that "you only live once." Where before everything had to be a particular way, like all the Christmas stockings matching, now it's so much more about the moments around those stockings.
"It doesn't really matter," she said. "You let go of all that detail stuff."
"Things are definitely put in perspective," said her husband.
Danica's brother Dylan, a student at Ricci Middle School, said his sister has changed his thinking on people with disabilities. Before, he thought of such people as "a little weird," he said, but now he knows that they're "just different," with a "problem they can't help."
The Deneaults are currently on the market for a new more handicapped-accessible home, though they say they want to stay in North Providence in part because of how well the school administrators have treated them and their daughter.
Danica's parents run the nonprofit "Little Heroes" to help provide children with special needs with walkers, wheelchairs, and other needed items. The next Little Heroes Motorcycle Run will happen on Sept. 7.