In the film “The Odd Life of Timothy Green,” the good deeds of the boy-creation have a direct relationship with leaves. That prompted Canyon Tallerico to collect leaves that were saved for an extended period of time until the 10-year-old gave them to the family of his friend, Jace Marietti, after the 17-year-old Price boy died.
Marietti’s death, and his rapidly aging body, was a result of a rare condition called Cockayne Syndrome.
Related to the issues Marietti had are connective tissue disorders. While Canyon’s father Stephen Tallerico said he and mother Crystal Tallerico of Helper have never been very concerned with a particular diagnosis, instead focusing on treatment and side effects, he suggested that Canyon suffers from a connective tissue disorder.
Ultimately, however, Canyon’s case is so unique that it is just one of 50 in the entire world – and whenever he has needed to wear one of 50 sets of casts covering his legs, he has needed to receive medical treatment every other Monday.
Canyon has enjoyed playing with a toy cash register his parents purchased for him two years ago and enjoyed selling lemonade and brownies at a Price yard sale by Stephen’s parents three summers ago. When folks turned over cash at one of his parents’ yard sales, he would put it in his toy depository. And he has loved using a $30 snow cone maker and getting ICEEs when his family is in the Wasatch Front, Stephen said.
“As Canyon gets bigger, we want for him to have something to do and have some independence,” Stephen added. Crystal pointed out how much their son loves people.
Canyon Ice LLC, a snow cone business named after the boy, was opened by the parents on Pioneer Day by Handy Mart in Helper. It should be open until Labor Day and return next summer.
Canyon’s deeds
The 10-year-old’s kindness to Marietti’s family is not the only act by Canyon that one may consider to be unusually thoughtful.
Every night before bed, Canyon will apologize individually to Stephen and Crystal for routine behaviors normally seen in children.
Yet, Canyon said, “sometimes I be naughty.”
Whenever Stephen goes on an extended trip for work, Canyon gives his father one of Canyon’s stuffed animals and a picture.
“Because I just miss daddy,” he said.
When Canyon’s Aunt Skippy died, Canyon said she had, even though he hadn’t seen her or heard anything – and his parents didn’t know.
The same day Jace died, Crystal’s uncle did, too. Canyon said he needed to call a brother of the uncle; the first thing he said was “I’m sorry for your loss,” Crystal noted.
And any time folks Canyon knows are sick or in surgery, to start his day, he says the people need to be checked on.
“Some of those things, I don’t think we’ve taught him,” Crystal said. “It’s rewarding.”
“He’s more connected to people’s grief for a 10-year-old,” Stephen said. “He has a genuine understanding for people’s sorrows.”
With such feelings towards at least one animal as well. Jax, the Tallerico’s dog, was near death when the family went dog shopping, but Canyon wanted him nonetheless. The dog rode in Canyon’s car seat on the way home.
Canyon’s health
With no diagnosis, life expectancy is uncertain, though when Canyon’s DNA is tested, it checks out as “perfect,” Crystal said.
Canyon has an extra set of ribs and vertebrae and club feet, with them rotated inwards at the ankle. When wearing casts that cover his legs from his toes to high thighs, he gets tested every other Monday. When not, every six months. He has worn casts 50 different times, the first at five days old.
“I hate casts,” Canyon said, before agreeing that they scare him.
Canyon’s arteries are just below the surface of his skin and he must be fed twice overnight with formula by Crystal, who hasn’t spent more than a half-dozen nights away from him.
“He’ll lick his lips and I’ll hear it,” Crystal said. “We take every opportunity we can get to dump calories in him.”
The 10-year-old weighs 40 pounds.
When Canyon was born (feet-first), he was shipped from Price to the newborn intensive care unit wing of Primary Children’s Hospital in Salt Lake City. There a dozen doctors, each of different specialties, assessed him. His parents were told that he had hydrocephalus, in which fluid was on his brain when it should have only surrounded the brain and spinal cord. He didn’t sit up until he was two and walk until five. It took that long because even when he was out of casts, his legs were then weak, Stephen said.
Connective tissue diseases mean shortcomings in protein-rich tissue that buoys organs and other body parts. Some such disorders are a product of alterations in specific genes. Many are extremely uncommon, according to WebMD.
The biggest risk for children with one of the diseases is their blood vessels rupturing, as connective tissues affect how strong a child’s veins and arteries are. If there is a rupture, it’s a matter of minutes between life and death, Stephen said. Crystal noted that the aorta at Canyon’s heart is dialating.
There is an international database of information on children who may suffer from a connective tissue disease; Stephen and Crystal arranged for doctor’s notes on Canyon to be sent to Stanford University for research, Stephen said.
As Stephen and Crystal have worried about treatment and side effects over a diagnosis, they are participating in a work group for exome sequencing, a major medical breakthrough last year, Stephen said. The parents also met with other couples whose children have gone through genetic tests, many of which were inconclusive, he added.
Canyon got a saliva test of which results were sent to a lab in California, as the parents worked with geneticists at the University of Utah.
Canyon’s condition means the parents have focused on the “simple things.” “If (Canyon) has wanted to stay up late, I say ‘why not?’ You can always sleep tomorrow,” Stephen said.
Canyon, etc.
Canyon enjoys showing his two-year-old brother Keagan how to do things.
For school, Canyon started at Castle Valley Center in Price, a school for disabled children. He then attended Sally Morrow Elementary School closer to his home in Helper and was entirely home-bound last year.
Canyon likes the latter because a teacher instructs him at home, he said.
He gets “mad” when people are judging – the thing that makes Crystal most upset – in staring and pointing fingers at him. But he loves the “jazzy chair,” a power chair Canyon drives, which Stephen said makes Canyon feel independent.
Crystal took care of Canyon during the day for nine years before starting full-time work last year for Zions Bank. Since then, her parents in Orangeville have watched Canyon during business hours. Stephen is with the National Guard.
“The memories and pictures and things we have together are irreplaceable,” said Crystal, who stood with Canyon in the outfield at Creekview Elementary the entire time he played T-ball at five and six years old. “I really do find comfort in knowing that my parents know him really well and know what he needs – they understand him.”
For Helper boy with extremely rare condition, selling shaved ice is paradise
Canyon Tallerico must receive medical treatment every other Monday when he is wearing casts that go up to his high thighs. The 10-year-old has worn 50 series of casts, his first at five days old. (Crystal Tallerico)