The boy behind the walk: the 2018 CHOC Walk Ambassador

An array of colorful balloons, iconic Disney characters, decorative posters, and thousands of vibrant faces. The CHOC Walk in the Park brings family and friends near and far together in support to walk and raise money for the children of the Children’s Hospital Orange County.

On Sunday, Aug. 26, St. Lucy’s had the privilege of representing this year’s CHOC Walk ambassador Justin Helper, son of St. Lucy’s guidance counselor and St. Lucy’s alumna Tricia and Colby Helper.

Justin is 11 years old and was born with an extremely rare condition known as lissencephaly ARX, meaning he was born with a “smooth” brain compared to our normal brains that have peaks and valleys. He was also born with agenesis corpus callosum, the absence of the callosum which is the central part of the brain that connects the two hemispheres.

He was born with active seizures and experiences them everyday.

“We don’t like to talk about what he can’t do, but in talking about it, it gives a better understanding of what his abilities are,” Tricia Helper said. “Justin functions as a 0-3 month year old. He cannot walk or talk, he is fed through a feeding tube, does not have purposeful movement, is wheelchair bound and completely dependent.”

Upon Justin’s birth, he spent the first four months of his life in the NICU at CHOC.

At the time, Tricia Helper was working as a guidance counselor at St. Lucy’s and stopped working due to Justin’s requirement for his demanding care. Justin’s sister, Kamryn, 15, was 3 and a half years old when he was born. Justin also has a brother named Ryan, 9. Both care and love for Justin very much.

Choosing CHOC was completely by chance for the family, Tricia Helper said.

“It was God’s way of telling us this is where you need to be,” she said.

CHOC is uniquely different in the sense that it is 100 percent family centered in their inclusion of care for the entire family.

CHOC’s child life specialists have played a key role in the Helpers’ journey. They have made Justin’s visits very welcoming not just for Justin, but for the whole family.

When Justin was born, the child life specialist explained to Kamryn what she was going to see when she first met her baby brother after one week week.

“He’s still my baby brother and I’m still going to love him and that’s all that matters,” three-year-old Kamryn said.

The Helpers have been walking in the CHOC Walk since 2012 and their goal was to always give back to CHOC. This year, Justin and his family had the tremendous honor of being the 2018 CHOC ambassador family.

“They turn a bad experience into a good one and take care of the little things. As a parent it’s one less thing you have to worry about,” Tricia Helper said.

Justin is CHOC’s 11th ambassador, the first ambassador to be in a wheelchair and the first with his condition. He represented children like himself as well as their families.

Justin and the Helpers had the opportunity to engage in several ambassador duties. The Helpers participated in a fashion show put on by the Anaheim Ducks, filmed a commercial with KTLA at Disneyland, and took part in CHOC’s Minnie Walk in the hospital.

Since 2012 Justin Helper’s team has grown from nine walkers to over 822 walkers this year. The team included St. Lucy’s, eight schools in the Chaffey Joint Union High School District, the Chaffey Administrative Leadership Association, HPI architecture, HMC architects, and many more family members and friends.

This year, Justin Helper’s team raised over $101,000 for CHOC in this year’s 2018 walk. In total, the Helpers have raised about $208,000 for the hospital since being with CHOC.

Tricia Helper is very appreciative of the St. Lucy’s community.

“As a Regent alumna and as a person who works here, I am so grateful for the love and support St. Lucy’s has given CHOC and my family. I am honored to be a Regent. The future is going to be bright to see all of what you young girls do,” Tricia Helper said. “It’s beautiful.”

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