UCP Super Star takes first steps thanks to new equipment

Levi hospitalized at Arkansas Children's Hospital in Little Rock. Source: Ellen Holden)
Levi hospitalized at Arkansas Children's Hospital in Little Rock. Source: Ellen Holden)
Levi with his parents, Ellen and Steven Holden. (Source: Ellen Holden)
Levi with his parents, Ellen and Steven Holden. (Source: Ellen Holden)
Levi with his physical therapist, Dr. Rachel Cunningham, his mother and Diana. (Source: KAIT-TV)
Levi with his physical therapist, Dr. Rachel Cunningham, his mother and Diana. (Source: KAIT-TV)

Four-year-old Levi Holden has defied doctor's diagnoses since the day he was born.

"So he (the doctor) told us there was no chance of having a full term pregnancy and probably would not be able to carry Levi," Ellen Holden, Levi's mother said.

Levi Holden is this year's United Cerebral Palsy Super Star, selected to represent the telethon happening on Sunday, January 28 on NBC Region 8 from noon until 6 p.m. 

Steven and Ellen Holden welcomed their baby boy at the University of Arkansas for Medical Sciences in Little Rock at 32 weeks gestation.

"They found that Levi had a deformed heart," Ellen said. "His heart only had two chambers and one valve."

Levi was immediately transferred to the NICU at Arkansas Children's Hospital. The Holdens were hopeful.

"At the end of the first 25 days, they noticed that Levi wasn't growing," Ellen said. "He hadn't even gained two ounces in 20 days!"

An MRI revealed that the medication he had been given to close a hole in his heart actually closed off the main artery at the bottom of his heart. Levi was rushed off to surgery.

"Levi died twice on the table before they could even get the ventilator back on him," Ellen explained.

But, the news got worse from there.

"Since he wasn't on a ventilator, he went without oxygen and that caused brain bleeds. Those brain bleeds are what they call cerebral palsy," Ellen said. The years that followed have taken the Holdens down an odyssey of doctors' visits—some all the way to the Mayo Clinic in Rochester, MN.

"When we got there, they told us that Levi might not live," Ellen said, her eyes looking away as she pointed to a photograph of a tiny Levi laying in a hospital bed with all kinds of tubes and lines attached to him.

Levi began having infantile spasms and the Holdens took him to a specialist at the Mayo Clinic. They were cautioned about the procedure to help Levi.

"They said it would be severe. They told me he probably wouldn't live and if he did, he would probably be a vegetable his entire life," she said. "We just prayed about it and just believed that he would be whatever God had planned for him."

The trip to Mayo did help.

Ellen quit her job to take care of Levi and spend every waking moment advocating for his care.

"I do anything I can for him to be the best of his ability and that's where we've got today with our Levi," Ellen explained with a broad smile.

Meanwhile, Levi has a faraway look in his eyes. But, at the Pediatric Therapy Associates in Searcy, Levi's physical therapist gets him to focus on one powerful tool. His love of Mickey Mouse.

"I've had to learn to accommodate and he loves Mickey," Dr. Rachel Cunningham said. "So Mickey is kind of my golden ticket with him. I can figure out how to put it or use it so he gets to get up and turn it on, or he's standing to watch it."

She points to a small video screen cradled in her lap. Levi is strategically positioned in a KidWalk gait trainer, a fairly new piece of equipment being used in physical therapy. It allows a child or small adult to stand and shift weight in all directions. The gait trainer encourages Levi to balance, strength and possibly weight bearing in the future.

"We're definitely working on some of the level skills where he's just assisting his daily functions," Dr. Cunningham said. "So, if he needs to get off of the toilet, here we are helping him to learn to get his feet on the floor and know that those are going to help him to stand, so that he's helping to assist with his body weight."

As Levi grows, there will be more demands on his parents. The goal is to help him become more mobile to assist his parents in the task of transferring him from place to place.

Levi is rewarded for taking steps by getting a chance to watch Mickey once he's reached his destination.

"My goal for him is to walk by himself," Ellen said. "Miracles happen every day. I've seen them with Levi over and over. So my goal is for him to be able to walk and for him to be able to use a communication device."

Levi is considered non-verbal. But, Ellen has developed an understanding over time of the sounds, a series of grunting noises, and what they mean. She says the biggest hurdle isn't communication, it's getting the equipment Levi needs.

"(UCP) helps a lot of parents to buy equipment that the insurance company won't buy," Ellen said.

Going to the grocery store was a challenge for the Holdens.

"Well, we found a seat, a "go-to" seat for Levi," Ellen said. "Because insurance wouldn't cover it, United Cerebral Palsy paid for that seat for us."

It has meant a world of freedom for the family.

"That seat allows him to go to a park and swing in a swing. It allows him to go sit in any seat. It straps to any seat so that he can go anywhere."

UCP provides financial grants to purchase specialized equipment for children and adults diagnosed with cerebral palsy. That's just one function of the non-profit organization which operates in Northeast Arkansas. To find out more about UCP of Northeast Arkansas, go to ucpark.org or call (870) 268-1454. 

SEARCY, AR (KAIT) - "We focus our life on what we can do to better Levi's," Ellen said. It's a mission made easier with the help of UCP.

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