RED BANK, N.J. -- It has only been five months since 3-year-old Collette first met the gaze of her parents Michele and Matt Higgins. Before that, the autistic child sang and played, walked and spoke, but it was all seemingly apart from the world right in front of her. A chance discovery -- her low cholesterol level -- led to a therapy that changed everything.
It's hard to underestimate the power of eye contact. It is how babies unlock human facial expressions, how toddlers learn to interact with other children. It forms the bond between a parent and a child.
At first, given all the unproven therapies that at times felt like navigating snake oil salesmen, the Higgins were wary of believing what they were seeing after Collette started the experimental treatment; their daughter slept through the night for the first time ever, she looked right into their eyes -- and she smiled.
"We have this conversation, we're getting our daughter back," said Matt, the executive vice president of business operations for the New York Jets.
"She was spiraling away from us before," Michele added. "From the time she was diagnosed it was like we were losing her more and more."
When Collette's doctor, Elaine Tierney at the Kennedy Krieger Institute, said physicians couldn't find enough funding or identify enough children with hypocholesterolemia like Collette to complete research into the connection between cholesterol and brain function in autistic children, Matt knew he was uniquely positioned to help. Even though Collette's parents have the means and drive to get her the best schooling and therapists, they feel a responsibility to give back.
"If you are given all those blessings, you better step up and do whatever you can to help, right?" Matt asked.
Matt, Michele and her sister, Megan Guinnessey, signed up to run the 2011 ING New York City Marathon on Sunday. Matt, 36, had run two years ago, after undergoing successful treatment for testicular cancer. Michele, 33, a former gymnast, began running in Princeton as Collette started a new program at the Princeton Child Development Institute an hour from their home.
"What's great about running the marathon it brings a lot of people together to support what you're doing," Matt said.
Even if it means missing the Jets game against the Bills at 1 p.m.
During a recent evening at their New Jersey home, Collette walked right up to a visitor and said hello while her big brother Matthew, 4, hung out with his grandfather. Collette played with Thanksgiving stickers and sorted her Halloween candy as her parents and aunt Megan talked about the arc of events that led them from Matt's diagnosis to Collette's and to running the Chicago half marathon earlier this fall as a tuneup for New York.
"[Running] takes me to a place where I can be relaxed," Michele said.
"It takes me to a place where I can eat a few more carbs," Matt said, reaching for another slice of pizza.
As their daughter stalled on one developmental milestone after another, they sensed there was something different about their blue-eyed girl. It seemed Collette was a little slow in reaching those milestones, but not enough to alarm her doctors. However, as she neared her second birthday, friends and family quietly starting encouraging her parents to see specialists, finally using the word "autism."
After the formal diagnosis, Michele and Matt poured themselves into finding the best treatment for their daughter. With early intervention one of the few scientifically proven methods of helping young autistic children, the family had rounds of therapists in their Red Bank home on a rotating schedule. It helped tremendously, but the family didn't stop there. They looked into diets, oxygen treatment and other therapies that seemed as wishful as waving a magic wand -- for thousands of dollars and no promise of success.
"If someone claims that, 'I can fix them,' you'll pay whatever," Michele said.
During one exhausted moment, Michele thought about what Collette's future might hold and turned to Matt.
"I don't think she'll ever look at me," Michele said. "My whole life."
It was excruciating. Matt said the difficulty of getting through the uncertainty and treatment for his cancer diagnosis paled in comparison to what he and Michele faced as parents.
But then, during one sleepless night, Michele opened up Collette's medical records and noticed something. Michele had always had a genetically high cholesterol level so she was sensitive to what the numbers signified. She noticed that Collette's was 105, extremely low for a child or an adult. A quick Internet search unearthed research affiliated with the National Institute of Health.
"Cholesterol is important in the brain," Tierney said. "It helps the cells grow and make connections."
A small sub-group of children with autism whose bodies don't make enough cholesterol may be helped by regular doses of a purified version. A double-blind study is being conducted at Ohio State, Kennedy Krieger and the NIH, and Tierney is looking for other children who fall into the group. The sticking point has been that children don't usually get their cholesterol tested, and getting the word out to those who treat autism has been slow.
When Michele gives the cholesterol to Collette, she calls it the yummy sauce. Collette gulps it from an eyedropper and happily goes back to rolling on the carpet.
"Now she definitely looks at you," Megan said. "I think the first time she came in and looked at me, it makes you want to cry."
Michele won't be at the starting line with her husband and sister. She hurt her knee during an 18-mile run. Matt took her to see the Jets' doctors but they told her the marathon wasn't in her future. Instead, she will be along the route to cheer them on. Matt is methodical about his runs, with a lox bagel pickup planned at Mile 16. He will only have one bite, but it's all about the incentive.
So far, with a page on the ING website, the family has raised more than $23,000 for the Kennedy Krieger Institute.
"We feel perfectly prepared and comfortable with the idea that this could prove to be something that doesn't bear out," Matt said. "But the idea that we're helping to fund the research so they can check it off the list and turn their energy to something else, is worth it in and of itself."
When Michele would allow herself to think of Collette's future, she imagined that Collette would never graduate in the traditional sense. Even as an adult she might need care. That still might be the case, but now Michele can hope for a more normal life for Collette.
"Now we're hopeful she could transition into a mainstream classroom," Michele said.
"It's unbelievable," Matt added.