Ambassador Jayden: Thanks to the Shriners, the force is with him

News-DemocratApril 20, 2014 

One of the Shriners Hospitals' new patient ambassadors raced through his grandma's house with light sabers raised.

They're souvenirs Jayden Harris, of Fairview Heights, picked up at the St. Charles, Mo., Shriners Circus in March.

"And guess what?" said the energetic 7-year-old. "There was a parade. I was in it. It was so fun. They gave me light sticks. They let me even keep them."

"He marched in with the Shriners," said Ivy Harris, Jayden's grandmother. "He met (Dennis Kelley), the grand potentate of Eastern Missouri Shriners who took his hat off his head and put it on Jayden's."

Jayden, a second-grader at William Holliday in Fairview Heights, was diagnosed at birth with Beckwith-Wiedemann syndrome, a congenital (present from birth) growth disorder that causes large body size, large organs and other symptoms.

"When he was diagnosed, I was terrified," said Ivy, 57, who works at St. Louis' Main Post Office. "I spent a lot of nights in the (Children's Hospital) NICU with him. His mom was still in the hospital. I was pushing her in a wheelchair to go see her baby."

Once released, Jayden required monitoring.

"We had to go every month for blood tests. With that syndrome, you could contract kidney disease. Once he reached the age of 3 or 4, every year it diminishes the chance of him having a problem."

But Jayden's legs were growing at different rates. He was referred to Shriners Hospital for Children in St. Louis.

"They said, 'Bring him on,'" said Ivy. "They welcomed him with open arms."

Jayden had surgery July 31 to lengthen his left leg and slow the growth in his right. "We prayed a lot," Ivy said. "We are a praying family ...

"Before the left leg was two inches shorter. Now, it's only one inch shorter."Jayden took thing in stride.

"I have pins in my knee because I was walking like this," said Jayden, walking on his toes. "Now, it's better.

"I had to use a walker, And guess what? One time I went around this entire house on my walker."

He missed a month of school and underwent physical therapy in October and November.

"I did some boring stuff first," Jayden said of physical therapy, "then some fun stuff."

By the holidays, Ivy had signed him up to be a patient ambassador.

"It's a way to give back and say thank you for everything Shriners has done for you," said Tammy Robbins, Shriners Hospital public relations director. "We have these kids and families on a list. When we have certain events -- tours, photo shoots, we invite those families to come and be part of that."

Jayden's first event was the Shriners Christmas party.

"Santa was there," said Jayden. "I got a prize."

The little ambassador also has been in a photo shoot holding stuffed bears and has visited patients.

"I tell them they will be good and safe there," he said.

"He's a people person," said Ivy, of Jayden, one of her eight grandchildren whose photos fill her phone. "(Shriners) has something every month. What we do depends on how my schedule works."

Some ambassadors move on to give presentations, speak to schools about disability awareness and how to treat people who are different, said Tammy.

"He's one of our younger ambassadors.

"If he stays with the program, he will get the benefit of meeting older children, learning from them, and one day, he will be mentor for younger kids."

About Jayden:

Family: son of Janelle Harris, 27, and grandson of Ivy Harris, 57

School: William Holliday Elementary School

Activities: Member of a Lego-building team, Robotech, and is a wolf cub with Boy Scout Den 1, Wolf Pack 586. Den 1 "I'm looking forward to camping. I bet it will be fun. We'll have s'mores and look for animals we never see, like bears."

Favorite subject: Math. "We are doing measuring. I love measuring stuff."

Favorite toy: Legos, especially Ninjago figures and playing video games

Favorite food: Chocolate ice cream

Favorite place to eat out: "McDonald's. I get a cheeseburger with pickles and ketchup."

Favorite Grandma meal: "Eggs, sausage and bacon, sometimes pancakes."

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