Brooklyn Cormier works on balance and stepping with the help of facility manager John Minahan at Project Walk Ability Center in Stratham. Brooklyn's therapists say she never complains during her workouts. [Deb Cram/Fosters.com and Seacoastonline]

One step at a time, she rises

Brooklyn's long journey of therapy leading to surgery in St. Louis

BY HADLEY BARNDOLLAR - PHOTOS AND VIDEO BY DEB CRAM

Published April 20, 2019

SANFORD, Maine — When Brooklyn Cormier uses the treadmill during her visits with “PT Pam,” she’s walking to Disney World. Other times, it’s Dairy Queen.

“OK, I made it to Disney,” Brooklyn said one morning, attempting to cut her 10 minutes on the treadmill short. Not just yet, laughed Pam Winsor.

At 4 years old, Brooklyn's day-to-day is dominated by physical therapy, though she doesn’t know any different; five days a week split between Project Walk Ability Center in Stratham, New Hampshire, and New Beginnings in Sanford. Recently, she completed three weeks of intensive work at a children’s therapy center in Massachusetts, called NAPA, just one of three in the world. Children with cerebral palsy, like Brooklyn, typically see better outcomes as adults if the necessary work is put in at an early age. Brooklyn’s mom, Shelby Cormier, has made that her family’s priority, undeterred by the financial load that comes with it.

Their latest therapy push has centered around accelerating Brooklyn’s strength training before her PERCS surgery, a tendon lengthening procedure, scheduled for April 23 at St. Louis Children’s Hospital. It’s the follow-up procedure to a sensory nerve-cutting surgery she had in 2017, known as SDR, and one that historically hasn’t been widely practiced on the East Coast.

Neurosurgeon T.S. Park is director of the Center for Cerebral Palsy Spasticity at St. Louis Children's Hospital, and has attracted families from all over the world with his minimally invasive SDR procedure, and then traveled from New Zealand to England to Israel to follow up with them.

Brooklyn has worked with Winsor, her physical therapist based in Sanford, since she was 1½. Their relationship began with home visits in Eliot, and now, either Shelby or Nancy Fontaine, Brooklyn’s grandmother, drive her and twin brother Logan to Sanford two, sometimes three days a week. Logan typically wears headphones and plays on an iPad while his sister exercises for two hours at a time.

It was the official first day of spring. A minivan pulled into the parking lot off Sanford’s Main Street, and Fontaine unbuckled Brooklyn and Logan from their car seats. She unfolded Brooklyn’s walker, and the little girl headed inside, wearing a shirt that read “strong” in sparkly letters.

Everything Brooklyn does with Winsor is “play-based” and functional, incorporating both fun and real world activities she’ll need to do independently in order to start school in the fall; things like opening doors, getting in and out of desks, and even sitting “criss-cross applesauce.”

At this visit, Winsor integrated Brooklyn’s “Hatchimal” toy, an animal that hatches from an egg and talks, by throwing it behind her and making her stretch backwards over a bouncy ball to retrieve it.

Winsor took Shlumpy, Brooklyn’s beloved stuffed animal, and hid it on top of a small rock climbing wall. In order to “rescue Shlumpy,” as they call it, Brooklyn had to climb to the top and ring a bell. In another activity, Winsor asked Brooklyn to check if the plant in the waiting room needed watering, forcing her to walk through the office, open a door and look.

“Everything we do is to help her be able to do things by herself,” Winsor said.

Though retired, Fontaine’s full-time job is caring for the twins while Shelby, 42, works as a teacher. Fontaine loves taking Brooklyn to therapy. Some nights they have an evening appointment, only to get back into the car 12 hours later for another one in the morning.

“I feel just so fortunate that I can do it,” said Fontaine, who has seven grandchildren. “The more therapy she gets, the better. Of course some days you’re more tired than others, but it’s just what we do.”

While the “day-to-day is slow,” Fontaine said, it’s “totally amazing” to look back on what Brooklyn has accomplished over the last two years. “I have absolutely no doubt she wouldn’t be where she is without that (SDR) surgery, though.”

At home, Fontaine and Brooklyn play “the princess game,” where they lay Brooklyn’s princess dolls across the living room floor. Fontaine asks her to walk to each one and retrieve them for her. She laughed they call it “at-home physical therapy."

While guiding Brooklyn on the treadmill at a steady pace, Winsor said, “Big, huge steps. Stronger, stronger. Stomp like you’re stomping on an ant, or a grape or bubble wrap.” Brooklyn alternates between wearing low and high braces, depending on how much support she needs in a particular activity.

Winsor is fairly confident Brooklyn will eventually be able to walk independently, but added, “There are so many variables, it’s hard to make a prediction.”

She called Brooklyn “ferocious and fearless.”

“This is an amazing family,” she said, dubbing all of the decisions Shelby has made for her daughter as “spot on.”

Cerebral palsy is the most common motor disability in childhood, according to the Centers for Disease Control and Prevention, Around 10,000 babies are born each year with cerebral palsy in the United States, and an estimated 17 million people are living with the condition worldwide. The Autism and Developmental Disabilities Monitoring Network reports 1 in 323 children has some form of cerebral palsy.

Brooklyn and Logan were born premature at 30 weeks, requiring them to spend just under a month in the neonatal intensive care unit. Premature birth, multiple births and low birth weights are risk factors for cerebral palsy.

“As things progressed and developed, you just started noticing Brooklyn wasn’t reaching the same milestones Logan was,” Shelby said.

An MRI revealed Brooklyn’s periventricular leukomalacia (PVL) diagnosis, which later led to cerebral palsy. Prior to her 2017 SDR surgery, she had no walking ability and could barely stand on her own. Today, she utilizes a walker full-time, and has the capability of taking 20 or so steps independently.

Cerebral palsy is Project Walk Ability Center’s “No. 2” condition behind spinal cord injuries, according to facilities manager and trainer John Minahan. The Project Walk brand has gained notoriety on the East Coast from paralympian swimmer and former "Dancing with the Stars" contestant Victoria Arlen of Exeter, who went from a vegetative, paralyzed state, to completely regaining all motor ability. Her family opened the Stratham location, known as Project Walk Boston.

At Brooklyn’s Project Walk appointment ahead of St. Patrick’s Day, she arrived in full holiday attire. She had a lineup of St. Patrick’s Day-themed outfits leading up to that Sunday, which also marked a special occasion for the Cormier family.

An annual law enforcement benefit is now held each St. Patrick’s Day in honor of police officer Pete Cormier, Shelby’s husband and the twins’ father, who died suddenly in 2015 of a heart attack. Proceeds this year were going to Hero Pups, an organization that pairs therapy dogs with veterans and first responders. In the past, "PT Pam" was a beneficiary.

Shelby referred to it as the “St. Paddy’s Day party for Daddy.”

Minahan began with some strength training, core and balance work. He said most of Project Walk’s clients have the right movements down, but they’re out of control. Much of the training focuses on placement and more precise movements. Their clients with cerebral palsy range from 13 months to 55 years old, he said.

“Brooklyn never complains at therapy,” Shelby said. “She does what she’s told. She just powers through. She’s doing more training at a gym than most adults do in a week.” During the three-week intensive round at NAPA, Brooklyn battled through an ear infection and the flu simultaneously.

“She definitely knows how to light up a room,” Minahan said, adding they have their “silly times” during therapy, and frequently talk about Shlumpy and cartoons.

While doing a stretching exercise, Brooklyn told Shelby she had a hot dog for lunch and played on the iPad during “rest time.”

Her small walker has red handles and a flower basket hanging off the back, carrying a juice cup and, of course, Shlumpy.

“The biggest thing that we’re fighting right now is getting her heels down,” Shelby said. The April 23 PERCS surgery is supposed to help significantly with Brooklyn’s “toe walking.”

Brooklyn examined her fingernails during an exercise, showing remaining bits of faded polish. Asked what her favorite color is, she said, “I have two,” counting on her fingers, “light pink and dark pink.”

Shelby said they’d grab a McDonald’s Happy Meal as a treat on the way home. Brooklyn planned for chicken nuggets and double fries. “And a toy,” she said.

“And what do you get to drink?” Shelby laughed, adding, “Mother of the year right here.” The answer is soda.

But that sarcastic designation Shelby gives herself, exhibiting an endearing insecurity, is precisely what Brooklyn and Logan, and the rest of her world, view her as: Mom of the year. She’s also so much more. But right now, mostly, she's exhausted. Her heart aches for Pete every day.

Their time together was ephemeral.

"I think that he would be really proud of us," she said. "And proud of (Brooklyn) and all that she endures day in and day out. I think he would be so proud of her, proud of us for not giving up and persevering and continuing on, because we have to.”

Asked what are her hopes for her family in five years, Shelby said, "I hope to see Brooklyn walking around by herself independently at school, at home, outside, in all environments. I hope that the hard work that we’ve put in, really since she was two or three months old, I hope all of that hard work pays off."

Shelby encouraged parents to do their own research, and talk to others who have already walked a similar road. In the beginning, many doctors were against Brooklyn undergoing the SDR procedure, and disagreed with Park's predictions that she would eventually walk independently. "I want parents to know that SDR changes lives," she said.

To end the therapy session, Brooklyn stepped out of her walker to give her mom a hug. She wrapped her arms around Shelby’s neck, her chin resting atop her shoulder. Her cheeks swelled from a closed mouth smile, and her eyes, too, were closed. It was a silent "thank you" and "I love you" wrapped into one gesture.

And once again, they're off to St. Louis.

This story is Part 3 of 3. See Part 1 "Will to Walk" and Part 2 "Tears from heaven" in menu at top of page.

HOW TO HELP: gofundme.com/help-brooklyn-walk

Brooklyn Cormier tries to walk in a straight line using her walker with the help of ankle weights, to try to keep her foot mechanics correct while working with Facility Manager John Minahan at Project Walk Ability Center in Stratham. [Deb Cram/Fosters.com and Seacoastonline]