Teens befriend, want to help legally blind 7-year-old
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Editor’s note: This story has been updated. The previous location for the truck rally on Saturday at 2 p.m. was originally scheduled at Pick Me Up in Ammon, behind Edwards Theater. It has changed to a new location at Cabela’s on 25th Street in Ammon.
IDAHO FALLS — An unlikely friendship between a group of teenagers and a legally blind 7-year-old boy has made a local mother feel overwhelming support after what the kids did for her son.
Kylara Large lives in Rigby with her three kids. She said her 7-year-old boy, Kaycen, has always had trouble sleeping, has had problems retaining information, and his eyesight started worsening in kindergarten.
“He repeated first grade. In the middle of last year, I noticed something wasn’t quite right. … He was still struggling with the ABCs, 123s, what day of the week it was,” Large said. “Over the course of the summer of 2022, his eyesight went from needing very strong prescription glasses to legally blind.”
The diagnosis
Large took her son to see a retinal specialist in Rexburg. The doctor then sent Kaycen to another eye specialist in Utah. Kaycen went through several eye tests and a genetic disease test.
He was diagnosed in October 2022 with Batten disease (also known as neuronal ceroid lipofuscinosis, or NCL). According to the National Institute of Neurological Disorders and Stroke, symptoms generally include progressive vision loss leading to blindness, seizures, movement disorder and dementia. Developmental skills like standing, walking, and talking may not happen or are gradually lost. Most children become bedridden and unable to communicate, or some children develop problems sleeping.
“He is my little warrior. He is our superhero. He does have his moments where he breaks down because he doesn’t really understand why or what’s going on. A couple of months ago, he asked me, ‘Will I be blind forever? Why do I have to be blind?'” she said. “He gets up every morning. Some mornings are good, some mornings are bad, but he still gets up, and he fights it.”
Kaycen walks with a cane to help guide him when he’s out in unfamiliar places in public. At home and school or daycare, he can navigate pretty well.
“He still watches TV … or he listens to it. There’s just a handful of movies that he will listen to now, basically, ones that he remembers watching, so when he listens to it, he can replay it in his head and understand what’s going on,” said Large. “He is absolutely obsessed with trucks and race cars, monster trucks and Hot Wheels.”
He also likes music and wrestling. He is part of the Warrior Wrestling Club in Rigby.
Kaycen’s new friends
A specialist who works with Kaycen took him to iJump in Idaho Falls last week. There was a group of friends that saw Kaycen.
“They completely took to Kaycen and fell in love with him. They were playing dodgeball with him and just throwing the balls back and forth, and it was so heartwarming,” Large said.
JR Chapman was one of the friends in the group that played dodgeball with Kaycen. He is 19 years old and said some of his other friends ranged in age from 15 to 18 years old. They all thought it would be fun to go to iJump.
“We just wanted to be little kids again. We saw Kaycen jumping around. Come to find out, he was partially blind. We started getting on our knees and letting him throw dodgeballs at us,” Chapman said.
He then learned Kaycen loved trucks, so Chapman took him out to his truck with everyone, sat him down in the front seat, and let him rev it. Watch the experience in the video player above.
“That was the biggest smile I’ve ever seen. … It just made my heart melt and it made me feel so good,” Chapman said.
He said the next day, Kaycen’s mom connected with him. She heard what had happened at iJump.
“It means so much to me that there are still amazing people in the world, especially at such a young age,” Large said. “Completely touched my life and his life as well.”
Large told Chapman the full rundown of her son’s condition.
“(It) touched me deeply because I have a heart condition. I remembered all the nice things that people had done for me, even with Make-A-Wish,” Chapman said.
Chapman has undergone two open heart surgeries and will have more throughout his life.
A truck rally for Kaycen
He explained that’s when he and his buddies decided they wanted to throw a big truck rally for Kaycen since he told them he loves trucks and cars. At first, it was only going to be about 10 to 20 trucks.
“We got together and made a big group chat for it, and it just went viral,” Chapman said. “We had big companies reach out like Diesel Brothers and say that they are coming, and so we started talking to local companies. … In total, what we have counted up is 150 vehicles going.”
Chapman has even decided that he and his friends will fundraise for Kaycen and put Hot Wheels in a box for him to take home. He also came up with another idea.
“I and my buddy Tegan Nelson came up with the idea that we are going to do a fundraiser where people can donate money to pay for medical bills, house expenses, etc.,” he said.
When EastIdahoNews.com asked Chapman what he likes most about Kaycen, he said that he just has a lot of energy, and reminds him of himself.
“Honestly, it reminded me of me and my surgery. He still has high hopes for everything and didn’t let anything put him down,” Chapman said.
The truck rally is called “Kickin it with Kaycen” and is scheduled for Saturday at 2 p.m. at Cabela’s on 25th Street in Ammon. The event details say, “Be respectful, no burnouts or revving.”
Chapman said he will give a speech in the beginning and have envelopes to collect money if anyone wanted to donate to Kaycen.
“It makes me feel good that we can do this for Kaycen and make him feel good,” Chapman said. “Come out and support him. Show him a good time!”
Large said she is so grateful for what Chapman and his friends are doing for her son. The kindness shown to her son is something that she’ll remember.
“The overwhelming support from the community and everybody who has banded together has been truly heartwarming and amazing,” Large said. “It’s all because of this group of kids. It’s so freakin’ amazing. People talk about how we are doomed with this younger generation, but this … those kids!”