From facial paralysis to a new smile

November 7th, 2018

Grace Cuellar believes in herself.

She’s the fourth of seven children born to Randy and Shelly Cuellar, a child so confident her teacher once said she believes Grace may become the first female president of the United States.

Tell the spunky 9-year-old that she should not do something, and her response almost always is the same.

“Watch me,’’ she says.

A photo of Grace Cuellar in the grass.
Grace Cuellar, 9, had a miraculous surgery to restore her smile.

Grace has already been through more health challenges than most people experience in a lifetime. At 2 ½, she was diagnosed with a brain tumor. She had surgery to remove the tumor, but she suffered a stroke after that left her arms, legs and face paralyzed.

She regained the movement in her arms and legs, but for most of her life, she was not able to move the muscles on one side of her face, which left her unable to smile. Doctors, at the time, said there was nothing that could be done about it.

For the Cuellar family, Grace has always been and will always be beautiful. She’s a middle child in a large family. Siblings range in age from 17 to 3, and the energy every day feels like Christmas. Kids being kids. Dancing, playing video games, turning cartwheels in the park.

Then, kids being kids, the question came up from other kids at school.

“Why is your smile broken?’’ they asked.

The second time around

Grace was not the first child in the Cuellar family to be diagnosed with medullablastoma, a pediatric brain tumor that originates in the base of the skull. Samantha, the oldest who is now 17, was diagnosed with the same type of brain tumor.

The Cuellar family poses for a photo at Black Forest Regional Park: (From L to R) Samantha, 17; Aiden, 13; Michael, 14; Randy; Grace, 9; Shelly; Victoria, 3 ½; Isabella, 7; and Jeremiah, 5.
The Cuellar family poses for a photo at Black Forest Regional Park: (From L to R) Samantha, 17; Aiden, 13; Michael, 14; Randy; Grace, 9; Shelly; Victoria, 3 ½; Isabella, 7; and Jeremiah, 5.

“We have gone through this twice,’’ Randy said. “We’ve actually had a neurosurgeon say that this is not genetic. The fact that we went through this twice — it’s just that lightning has struck twice.’’

While Grace was hospitalized following surgery and the subsequent stroke, word traveled quickly in the hospital in Arizona, where they lived at the time, that the Cuellar family had two children who had been diagnosed with brain cancer.

“People sought us out because they were going through it for the first time,’’ Randy said. In the hospital, Randy and Shelly became mentors and support for other families, trying to help them cope in the time of crisis.

Randy doesn’t know why two children had the same brain tumor.

“We don’t know the reason,’’ he said. “But we’ve always just kept moving. And we are very intentional to take what we have gone through and to try to encourage other people – to give hope, to do whatever we can, to help.’’

Samantha recovered after her surgery, while Grace had a more difficult time with the stroke and paralysis.

A wonderful spirit

Her parents and her three older siblings fed off Gracie’s conquering spirit. They recently heard from a nurse in Arizona, who remembers Grace doing a Bumble Bee Dance, to the delight of caregivers and family.

“She’s 2 ½ years old and she is literally on the most intense chemo. Where most people would be lethargic and lying down in a bed, she is out in the hallway, dancing to ‘I turn around, I touch the ground, I wiggle it.’ ”

Grace Cuellar swinging from playground equipment.
Grace Cuellar believes in herself. Here, she swings from playground equipment at Black Forest Regional Park.

To this day, it remains Grace’s personality – outgoing, fun, and full of energy and confidence.

“She is our little fighter,’’ Shelly said.

Despite being told after Grace’s stroke that there would be no remedy for her facial paralysis, Randy, a youth minister, and Shelly prayed for a miracle. They had been seeing an eye specialist for Grace’s strabismus, or crossed eyes.

A doctor in Colorado

The specialist told Shelly that he had heard of a doctor in Colorado, Dr. Fred Deleyiannis, who does surgery to help children who have facial paralysis.

Dr. Deleyiannis is a plastic surgeon at UCHealth Memorial Hospital. He restores vital function for people who have suffered severe trauma or cancer. His work is complex and challenging and not about cosmetics but helping people heal from malformation or devastating injuries.

Board-certified in plastic surgery and otolaryngology (ear, nose and throat), Deleyiannis talked to Randy, Shelly and Grace about a surgery to restore Grace’s smile. Dr. Deleyiannis explained that he would take a piece of the gracilis muscle from Grace’s thigh and place it under her cheek in the area responsible for facial movement.

“The vessels that supply the muscle are then connected to the vessels in the neck and the nerve that makes the muscle contract in the leg is then connected to a nerve in the face that enables a person to smile,” Deleyiannis explained.

Dr. Fred Deleyiannis is a plastic surgeon and otolaryngologist at UCHealth Memorial Hospital.

Initially, Randy and Shelly were not ready to do such a surgery. Grace had already been through so much because of necessity. Making a decision to put her under for a 10-hour surgery and weeks of recovery took time to consider.

Two years later, when the kids at school began asking questions, Randy and Shelly grew more accepting of having surgery.

“It has nothing to do with whether she is beautiful or not beautiful. It has nothing to do with beauty,’’ Randy said. “But we know that others may not see her in the same light as we do. We know how our world can be, and we know the challenges that could come. So we just want to provide her the opportunity to have as equal a playing field as she can have.’’

“That said, this has never affected her because of her spirit and personality. We have absolute confidence in her, no matter what. She’s going to dominate and conquer anyway. I think the hardest part was: We didn’t have a problem with it; she didn’t have a problem with it, so why do it?’’

A miraculous surgery

In May 2018, Dr. Deleyiannis performed surgery at Memorial Hospital Central in Colorado Springs. He spent hours doing meticulous work under a microscope, connecting tiny vessels and putting them in the correct place.

Grace recovered with help from her brothers and sisters, who came to her bedside as soon as they could.

“The kids went through this, too. They have experienced like everything, every moment, every difficulty, every joy and excitement and every win. We have pictures of Gracie in bed and when her older siblings would come to visit, she lit up. It was the best part of her day,’’ Randy said.

Shelly saw an immediate change in her daughter as soon as she came out of surgery.

“I broke down crying; just coming out of surgery her face was brighter. We are just so grateful because I feel like her future seems so much brighter,” Shelly said.

As with most surgeries, the results improve over time.

“She can move her whole face and engage the world now with what is considered almost a normal smile.  She has done great and will see improvement as the months and years go by. Smiling will become something she can do without much thought,” Deleyiannis said.

A few weeks after the surgery, Grace took a video of herself with her father’s cell phone, and videotaped herself with a great big grin on her face.

She handed the phone to her mother to watch the video.

“Look what I can do!’’

 

About the author

Erin Emery is a writer for UCHealth and is based in Colorado Springs.