Emma Jean Williams and her mom, Roxy Alyea. Emma has cerebral palsy and is one of our 2019 GABR Stars.

Meet Emma: 2019 GABR Star

February 21, 2019

Support kids like Emma at the 23nd annual Sanford Health Foundation Great American Bike Race presented by American Bank Center on April 27 at Legacy High School.

Emma Jean Williams never quits smiling, no matter how tough things get. Even when she is frustrated, her bright smile rarely disappears.

At just 5 years old, Emma talks to everyone she meets, likes to draw and dances to her own beat — even when cerebral palsy keeps her from moving like other kids.

“With her driven attitude and positive demeanor, I wouldn’t change a thing,” said Emma’s mom, Roxy Alyea. “She can make anyone’s day. She does her own thing and makes her own way, and you just never know what’s going to come out of her mouth.”

About a month before Emma’s due date, Roxy and her fiancé, Danny Williams, learned their baby wasn’t getting proper nutrition. Without an emergency C-section the same day, Emma wouldn’t have survived.

That was just the start of Emma’s medical journey. She was born with an enlarged heart and a brain bleed, requiring expert care in the Sanford Bismarck neonatal intensive care unit.

After a few weeks in the NICU, Emma went home on her original due date, earlier than her doctors initially expected. Roxy and Danny hoped that would be the end of Emma’s medical troubles, but they knew cerebral palsy was a possibility and kept a close eye on Emma’s development.

When Emma wasn’t holding up her head and crawling like other children her age, they started physical and occupational therapy right away. Emma was officially diagnosed with cerebral palsy as a 1-year-old.

Remembering the fear and uncertainty of that first year still makes Roxy emotional.

“We just take things one day at a time,” Roxy said.

Today, Emma continues therapy, working to improve her mobility and doing things most people take for granted — like zipping her coat and dressing herself. Her left side is affected more than her right, so she’s always working to get stronger on her weaker side.

Emma can get around in her customized hot pink and purple sparkling wheelchair. It has a special mechanism that allows her to steer in any direction using just her right hand. She’s also getting better at using her walker, and one day, Roxy believes she’ll walk on her own.

“She’s been very ambitious,” Roxy said. “At therapy, they’ve never seen her go backward. She’s always moving forward and wanting that next achievement.”

All that hard work will pay off this fall when Emma enters kindergarten.

“She wants to be so independent,” Roxy said. “We would do anything to help her live life to the fullest, and I think so far she is. You can see it in her smile.”

The Great American Bike Race (GABR) has helped make Emma’s success possible. Funds from the annual event have helped the family with costs not covered by insurance including Emma’s special wheelchair, some therapy sessions and other treatments.

“It was just awesome to see all the teams coming together,” Roxy said. “It’s just great being a part of that.”

Her family can’t wait to pay forward the support they’ve gotten from GABR by riding in this year’s event as Emma’s Gems.

By supporting GABR, you help local kids, like Emma, continue to reach for the stars.

 

GABR 2019

GABR takes place on April 27 at Legacy High School. Here are three ways to get involved today:

  • Create a team. Visit gabr.sanfordhealth.org to start yours today.
  • Become a volunteer. From registration workers to timers to setup and cleanup crews, there are plenty of options if you would like to help out at the race. Sign up today.
  • Donate to your favorite rider. Find a participant and give directly to his or her team at gabr.sanfordhealth.org. All funds raised will support local kids and families.