Keeping the bar high: Chasing adventure with cerebral palsy

Maggie has cerebral palsy — and a big smile
PHOTOS: COURTESY OF THE KING FAMILY

Maggie King is a thrill seeker: At 25, she’s been scuba diving, ridden in a hot air balloon, tackled every ride at Disney World multiple times and even flown to Los Angeles to attend the live finale for the 21st season of the TV show Survivor. “She’s all in, all the time,” says her mom, Dana.

It’s an attitude that Dana and her husband Dennis believe their daughter developed soon after birth, when an episode of anoxia, or severe oxygen deprivation, left her with spastic quadriplegic cerebral palsy (CP) and other medical concerns. “At first, we were petrified,” says Dana, who was a social worker at Maggie’s birth hospital at the time. “We never expected to be on the other side of things. It was like being in a giant fog.”

But when Maggie was transferred to the neonatal intensive care unit at Boston Children’s Hospital, her parents began to realize that, while their daughter would have many challenges, she would also have many opportunities. “Early on, the nurses encouraged us to read and talk to Maggie, to include her and involve her,” Dana explains. “Right from the beginning, we tried to focus on what she can do, not what she can’t.”

Maggie didn't let cerebral palsy keep her from a hot air balloon ride
Maggie in a hot air balloon

Surviving and thriving

Just like the castaway contestants on her favorite TV show, Maggie, too, is a survivor.

Having received her care at Boston Children’s for nearly a quarter of a century, Maggie and her family have spent more time at the hospital than many clinicians. “We’ve been through doctors, nurses — and renovations,” jokes Dana. Maggie’s brother DJ, now 20, spent so much time going to appointments with her as a child that he wanted to have his third birthday party at the hospital’s Patient Education Center.

Among the lasting relationships they’ve forged are those with John Costello, director of the Augmentative Communication Program, speech-language pathologist Alycia Berg and occupational therapist Jennifer Buxton. Because Maggie is nonverbal, she’s learned other ways to communicate. As a toddler, that involved being given a series of choices and using her eyes to indicate “yes” or “no.” “She has the biggest blue eyes,” says Dana. “And she can tell you she loves you — or tell you off — just by looking at you.”

Diagnosed with cerebral palsy, Maggie goes scuba diving
Maggie scuba diving

A special relationship

Over the years, communication aids have evolved as Maggie has grown. Today, she relies on a special speech-generating computer device — preprogrammed by her younger sister and best friend Abbie, a graduate student in speech-language pathology — to talk. The technology allows her to better communicate, whether that means speaking to a group of medical professionals or plotting her latest practical joke with Abbie.

“Despite her differences, Maggie is able to do just about anything and often chooses to do it with me,” says Abbie. “There are many days where I think about how life would be different if my sister didn’t have cerebral palsy. But all that matters is that I have an incredible best friend who I know will always be up to go on a crazy adventure and love me unconditionally.”

Maggie's family supports her as she thrives with cerebral palsy
Maggie with her parents, sister and brother.

Using her voice

When she’s not chasing adventure, Maggie — who has also seen Dr. Laurie Glader in the Cerebral Palsy and Spasticity Center — can be found working at her local town hall or reading on her iPad. A voracious reader, she especially enjoys books by or about people with disabilities. And she’s not above playing a prank or two on her clinicians, sometimes gleefully hiding from them, motorized wheelchair and all, during appointments.

In a recent talk Maggie gave at Boston Children’s, she summed up the philosophy that’s guided her throughout her life. “Always think outside the box,” she told them. “And keep the bar high.”

Learn about the Cerebral Palsy and Spasticity Center.

 

 

 

 

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