"Angel" isn't a word you tend to associate with an 8-year-old boy. But everyone seems to use it when they talk about Tyler Horton.
An incurable disease is eating away at Tyler's brain, and in just seven months sent the Junior Jazz athlete into a debilitating tailspin. Today, the boy's smile offers comfort, reminding people of the child who was. His mother, Wendy, doesn't think he'll make it more than six months.
But there's so much more to Tyler than limbs that don't work well and a tongue that won't speak. The people who love him are determined to make the most of whatever time they have left together. They know he's here for a special reason. And an entire South Jordan community is taking heed.
"He is a little angel. I don't know how else to describe him," said grandmother Marilyn Shelley. "I think he was sent here to earth to teach all of us things we needed to learn: to be more Christlike and more giving and loving. I think he has fulfilled his mission here, and his Heavenly Father is calling him home."
The eldest of Ken and Wendy Horton's four children is as boy as a boy gets. The kind of kid who sneaks up from behind you, then tickles you to tears. The jokester who roots for the Utes because you're cheering the Cougars.
He loves things that roll. He was the first of his Memorial Drive pals to ride a bike without training wheels. Soccer balls, running back Terrell Davis and the Denver Broncos. He loves them all.
Quite an arm on this little slugger, too. Last summer, some of his hits arched over ball-capped heads and into the outfield.
He's thoughtful. Caring. Obedient. Friends are his world.
But things started to change last spring. He seemed to have trouble hearing what people were saying. Grandma Mildred Horton remembers repeating herself over and over before he would respond.
Tyler went in for a hearing test, but his ears were fine. His parents wondered if he had a learning disability.
Not long after, Tyler's bouncy steps included a little stumble. Last May, he was referred to a neurologist.
Wendy Horton prepared herself for the worst: Her boy must have a brain tumor. Looking back, she would have preferred cancer.
"We kept waiting for (the doctor) to say, 'If it's this, then we can do this.' But he never said the word 'then.' There was no bright side."
Tyler has adrenoleukodystrophy, ALD for short. It's the same disease played out in the movie "Lorenzo's Oil." Affecting one in 100,000 children, it's a degenerative disease passed from mother to son. Girls almost never get it.
Tyler has the classic form, which is the most severe and affects boys when they're between 4 and 10 years old.
The myelin sheath, or fatty covering surrounding nerve cells in Tyler's brain, is breaking down. Neurons can't send information. His adrenal gland is malfunctioning.
With ALD comes visual loss, learning disabilities, seizures, inability to speak properly, trouble swallowing, deafness, coordination problems, fatigue and progressive dementia.
A bone-marrow transplant offers the only hope to stop ALD's progression.
But by the time Tyler was diagnosed, it was too late.
When Elk Meadows Elementary started year-round school last July, Tyler's illness showed. He had trouble processing sounds into words. He was losing the fine-motor skills he needed to write, color and cut out pictures.
Wendy Horton took Tyler home early one day, and Tami Ruybal talked to her second-grade class.
Everyone, at some time in their lives, will die. Every day is precious. Tyler has a bad illness. And he probably will never be a teenager and go to junior high. But Tyler is with us now. He still loves all of us the way he did back in first grade. He still likes to play. And he's still your friend.
Some children cried. Most knew Tyler was sick, but few understood he would die from it. Some asked questions. Ruybal gave answers they could understand.
"We call him our guardian angel, because we talk about how angels are special and having angels around you makes you feel better," Ruybal said.
The children decided to become Tyler's protectors.
They pushed their chairs in so Tyler wouldn't trip over the legs.
They carried Tyler's lunch tray, and fed him when he couldn't feed himself. Some brought juice in case Tyler got thirsty the drinking fountain was hard to work.
They gave Tyler his own soccer ball so he could kick it and they could fetch it every recess. When Tyler needed a wheelchair, they just propped the chair up a little so he could kick with what strength he had left.
They traced their shoes onto fabric, signed the swaths and tacked them to a soccer-ball quilt for him.
When he lost his ability to speak clearly, he and the rest of the class learned some sign language. Sometimes, the kids simply signed Tyler's favorite color, "blue," and he beamed.
Tyler worked with an aide in his regular class. Soon, he spent most of his time in a special-education classroom. About a month ago, it was getting hard to learn anything.
"Each little thing is like losing another part of Tyler," Wendy Horton said. "He's mad. He's mad at life now."
There's a schoolhouse in Midvale where people say miracles are worked.
As Jordan Valley principal John Gardner puts it: "You can't spend time with our students and be the same person you were before you came. It's impossible."
Jordan Valley School is for preschoolers through 21-year-olds with severe multiple disabilities. Some students are medically fragile.
Jordan Valley seemed a perfect fit for Tyler. But he didn't want to leave his buddies at Elk Meadows. So moms and dads came up with a compromise.
They bring Elk Meadows to Tyler.
"I feel like the classroom extends beyond walls . . . and that children on occasion should have the opportunity to go beyond the school to serve," Elk Meadows principal Steven Burnside said.
A handful of parents take their children to Jordan Valley in the mornings to spend time with their friend. When pals aren't there, family members are.
"I think it's important for him in these last days of his life to be surrounded by family and friends. That's what we're shooting for," Wendy Horton said. "There's nothing for him to learn. My only goal is that he has fun."
Little Bradley Holtry visited last week. Seeing the two play, you'd think nothing was amiss.
"He needs help, and he likes me," Bradley said after gently bouncing Tyler on a giant ball. "He never yelled. He never got mad at anyone or any of those mean kinds of stuff. He's always been a plain ol' person."
Bradley pedaled a big trike, pulling Tyler's wagon. He showed Tyler how toy cars race down a plastic zigzag track. He pushed a school-lunch cart into Tyler's classroom so he could eat with Tyler and his new classmates.
This is how Tyler teaches others.
Mother Barbara Holtry has learned to take advantage of time with loved ones.
Gretchen Williams feels uplifted and grateful to serve each time she and her son, Matthew, visit.
Wendy Horton has learned to accept the gifts of time from friends and neighbors. She also has to care for Tyler's little brothers, Cory and Ryan, and his 3-month-old sister, Kayla.
"We don't dwell on the fact Tyler is ill. It's more how can we help Tyler adjust to his illness," said Nicole Bangerter, who visits Jordan Valley with her son, Spencer. "It's a life lesson for him and his whole class."
On Tyler's last day at Elk Meadows, Ruybal's class threw a party. Ruybal made a photo scrapbook of Tyler, complete with snapshots of his Halloween dragon costume.
The children gave Tyler stuffed animals and Arthur videos and shared treats. They wrote Tyler good-luck letters and read them aloud to him. Some kids and moms cried.
The children had tucked tiny copies of their letters into helium balloons, some in true Tyler blue.
They walked outside holding fast to the strings.
Then, they let go.
"Bye-bye, Tyler!" they waved, watching the balloons float higher and higher.
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