POULSBO — With the movement of her eyes, 15-year-old Kara Charlot communicates with her mother, Sherry.

She picks out her outfits for school with a single gaze. She selects activities by panning her pupils toward the object of her attention. In one glance, she can say hundreds of words without ever speaking one.

Now, Kara is in desperate need to communicate with her own community.

Diagnosed at an early age with cerebral palsy, Kara has been confined all her life to a wheelchair, her muscle coordination and movements severely limited.

Despite it all, Kara, 15, was becoming more and more involved at her school, Poulsbo Junior High, most notably as a cheerleader on the school’s spirit squad.

However, the effects of her cerebral palsy saw her bedridden this past winter and bound to the Children’s Hospital in Seattle for four months awaiting major surgeries while her health also deteriorated.

She pulled through life-changing “spinal fusion” surgery in February — one that helped correct a spine so crooked it was in the shape of the letter “c” — but her family has since encountered a new problem.

She’s now too tall.

Her height increased three inches following the surgery, and as a result, she’s outgrown the family van. The only way she can ever leave their home on Caldart Hill is through help from local public transit. Otherwise, she — and the family as a whole — can’t go anywhere.

“We went from being a family, active, despite her disabilities, to one that can’t go out together at all,” Sherry explained.

Even so, Sherry remains positive, keeping an easygoing candor in the midst of the family’s seemingly endless uphill battle.

A downward spiral

Cerebral palsy is caused when faulty development or damage to the brain’s motor skills areas causes a person to experience chronic problems in body movement, muscle coordination and posture, according to the organization United Cerebral Palsy. There is no cure.

Though the condition does not get worse over time, complications do develop, such as muscle spasticity, where muscles spasm and contract involuntarily.

To help with the complications, Kara has an intrafecal pump, about the size of a hockey puck, implanted in her abdomen. Extended from the pump is a catheter that reaches around to the base of her spine, administering a drug which helps keep alive and create healthy nerve cells that combat the spasms. The Charlots must journey once a month to the hospital for a drug refill, relying on a para transit service they’re uncertain will last much longer.

To make matters worse, the pump made her spine and torso curvature, already at about a 35 degree angle due to cerebral palsy, worse. The curve increased to about 100 degrees, Kara’s frail frame at such an angle that her hip was touching her rib cage.

“If you pressed on her stomach,” her mother Sherry said, “you could feel her spine through it.”

The curving could become fatal, as Kara’s vital organs were pushed to her sides by her protruding spine, causing her intestines to “twist on top of themselves,” Sherry said.

Her weight was falling fast, down to 60 pounds in November. The doctors couldn’t perform a “spinal fusion,” to help straighten her spine with steel cabling, unless she gained at least 10 pounds. Unfortunately, Kara was also prone to infections from her IV, and a central line had to be put in her chest, close to her heart.

“We’re battling all these things as we’re trying to get her weight up,” Sherry said.

Kara’s mother knows all too well the procedure of straightening a spine. Diagnosed with muscular dystrophy, a condition which causes the body’s muscles to become weak, she’s had four of the fusion procedures herself.

“I have enough metal in me to set off metal detectors at the airport,” she admitted.

A new hope —

and dilemma

Sherry knew that blood would be needed as well for Kara’s surgery. The week prior, blood drivers were held by North Kitsap High School and Poulsbo Junior High School, through the help of the LEO Club and its advisor, Jim Stark, and at North Kitsap Fire and Rescue. Eighty-seven units of blood were brought in on Kara’s behalf, an incredible amount on such short notice, Sherry noted.

On Feb. 17, doctors performed a marathon seven and a half hour surgery to straighten her spine, inserting the steel cabling and bone samples that guided the length of her entire vertebrae column. The result of which saw Kara’s height increase three inches.

“They got her pretty straight,” Sherry said.

Now, the latest dilemma has emerged: her new height in her wheel chair is far too tall for the family van. Though the van has been examined by mechanics, it cannot be modified to suit her new height.

The resulting impact is that Kara is literally stuck inside the house, 24 hours a day.

“Right now, we can’t even go out as a family to eat,” Sherry said.

Kara’s wheelchair was improved following the operation, but also still needs some work, Sherry said, and Kara also needs new leg braces.

Sherry already works tirelessly in many advocacy and support groups around Kitsap, including The Arc (which helps inclusion efforts for children with all disabilities), Shibshops ( a support group for siblings of developmentally disabled children) and a Kitsap County support group for fathers of developmentally disabled children). The family is in dire need of assistance.

The school district may be able to take her to school one day a week, but if Kara encounters any health problems at school, Sherry cannot pick her up without a van.

For now, Kara watches much TV, many movies — Scooby Doo is her favorite — and also loves to watch sports. With no answer to the problem in sight, Kara’s plight will continue.

“Until we figure out some kind of solution,” Sherry said, “There’s really no way to go anywhere.”