Family of boy with rare genetic disorder thankful for care at Primary Children’s

Nov 11, 2022, 9:28 PM

SALT LAKE CITY — When a child has a diagnosis of a disease that is life-threatening or brings with it uncertainty about how long the child will survive, Primary Children’s Hospital creates a palliative team — a group of professionals to care for every aspect of that child’s life and his family as well.

With a big smile and a clap of his hand, anyone can tell that Emmett Bleyle is a lively, happy 5-year-old. His parents will tell you that every day of his life is a gift.

“He goes through things that I couldn’t even imagine going through, and he handles it with such a grace,” Rylie Bleyle, Emmett’s mother, said.

When he was just 2.5 months old, Jace and Rylie experienced several anxious days at Primary Children’s Hospital. And then came the shocking diagnosis.

Jace, Emmett’s father, explained, “You got a whole mess of things affecting pretty much his whole body — from his brain, to pancreas, liver — just because of that process isn’t working right. I mean, 70 to 80% of the kids that they know about with the diagnosis don’t make it past one. So, she was devastated. I was devastated.”

Emmett has glycosylation, a rare genetic disorder. There are only about 1,200 cases in the world — 200 in the U.S. and only Emmett in Utah.

Speaking of the research their doctors had to do, Rylie said, “And there was a really big learning curve for us, but also for our doctors, trying to take care of us and trying to give us answers. We had so many questions, and you know, very, very few answers.”

They say they have lost count of how many times doctors and nurses at Primary Children’s saved Emmett’s life.

He cannot walk or speak and needs a feeding tube. Everyone who meets him feels his enthusiasm for life.

“He has lit up the room since he was a baby. He is affectionate. He wants to be with people. He’s very, very social,” said Jamie Seale, a nurse practitioner.

Seale has been caring for Emmett since he was a year old.

“We like to make sure that the children have the best quality of life that they can, that they really can experience the joy and happiness that all children really should have,” Seale said.

She is a member of the Palliative Care Team, which meets the needs of the child with an unknown life expectancy and his or her family. This group includes doctors, nurses, child life specialists, social workers and a chaplain.

“And so, we have to support those families, those parents, because they are the voice of their children, and they are the ones who have to make these incredibly difficult decisions. And we don’t want them to have to do it alone.”

During COVID-19 and isolation, the PCH team was there for the Bleyles.

“They have that saying that ‘not all heroes wear capes,’ and I totally believe that being in the hospital at Primary Children’s,” Jace said.

“And they’re the ones that are like, there to kind of, to pick your pieces up. Because you can’t do it yourself, you know, and so they literally are second family,” Rylie said.

Emmett is thriving, his parents say.

Rylie described what people say about her son, “There’s something about him that people are just like, ‘He sees into my soul.’ Right, you know, like, he looks at, and you know that, like, he can’t talk to you, but he understands you.”

They credit the remarkable medical team and the care that he receives from the hearts of Primary Children’s professionals.

With tears streaming down her cheeks, Seale said, “So we want to focus on that whole family and that whole child. We want to make sure that they have as much joy as possible.”

Joy is the word his nurse and his parents use to describe Emmett. It is, they say, what they want for him and what he brings to the world.

KSL 5 TV Live

Local News

Man tees off hitting into the sun...

Larry D. Curtis

How to watch Ryder Cup and NASCAR this weekend

It's an autumn weekend packed with sporting events on NBC, including college football, the NFL, the Ryder Cup in Rome and YellaWood 500 in Alabama.

2 hours ago

(Brianna Chavez, KSL TV)...

Josh Ellis

Downed power lines blocking 2600 South near US 89 in Davis County after crash

Crews have closed 2600 South near U.S. Highway 89 following a three-car crash that downed some power lines in the area.

2 hours ago

President Russell M. Nelson of The Church of Jesus Christ of Latter-day Saints speaks during the Sa...

Josh Ellis

President Russell M. Nelson not attending general conference due to fall, injured back

President Russell M. Nelson of The Church of Jesus Christ of Latter-day Saints will not be able to physically attend this weekend's general conference after he fell and injured his lower back.

3 hours ago

(Utah Highway Patrol)...

Josh Ellis

One dead, several injured in head-on crash in Kane County

One person was killed while six others were injured -- including two critically -- after a pickup truck and SUV crashed in southern Utah on Tuesday.

4 hours ago

woman stands at podium at Utah State Capitol...

Lindsay Aerts and Larry D. Curtis

‘These allegations are true,’ say former OUR employees about Tim Ballard

An attorney representing a group wanting to make a public statement about Operation Underground Railroad read a statement Thursday morning.

5 hours ago

Weber High School file photo...

Josh Ellis

Weber High principal retires as Weber School District finishes investigation into complaints

Weber High School Principal Chris Earnest has announced her retirement as the Weber School District concluded an investigation into complaints involving Earnest.

6 hours ago

Sponsored Articles

Design mockup half in white and half in color of luxury house interior with open plan living room a...

Lighting Design

Lighting Design 101: Learn the Basics

These lighting design basics will help you when designing your home, so you can meet both practical and aesthetic needs.

an antler with large horns int he wilderness...

Three Bear Lodge

Yellowstone in the Fall: A Wildlife Spectacle Worth Witnessing

While most people travel to this park in the summer, late fall in Yellowstone provides a wealth of highlights to make a memorable experience.

a diverse group of students raising their hands in a classroom...

Little Orchard Preschool

6 Benefits of Preschool for Kids

Some of the benefits of preschool for kids include developing independence, curiosity, and learning more about the world.

rodeo contestant on a saddle bronc...


Get Ready for the Days of ‘47 Rodeo!

The Days of '47 Rodeo is a series of events everyone in the family can enjoy, with world-class rodeo contestants vying for the gold medal.

Electric LED Lightbulb Change In Light At Home...

Lighting Design

How to Know When to Upgrade Your Lighting

This guide explores indicators that suggest it’s time for a lighting upgrade with tips to make an informed decision when you’re ready to buy. 

Brunette guy in headphones playing games on his desktop computer...

PC Laptops

Looking For a New Computer? Use This Desktop Buying Guide

Choosing a new desktop computer can come with a lot of questions, so we created this desktop buying guide.

Family of boy with rare genetic disorder thankful for care at Primary Children’s