Utah

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

Estimated reading time: 3-4 minutes

SALT LAKE CITY – When a child is diagnosed with a life-threatening illness or there is uncertainty about how long the child will survive, the Primary Children’s Hospital assembles a palliative care team – a group of professionals who take care of every aspect of the child’s life and his family.

With a big smile and a clapping of hands, everyone recognizes 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 I couldn’t even imagine and he handles it with such grace,” said Rylie Bleyle, Emmett’s mother.

When he was just 2 1/2 months old, Jace and Rylie Bleyle endured several anxious days at Primary Children’s Hospital. And then came the shocking diagnosis.

“You have a whole mess of things that pretty much affect his whole body – from his brain to his pancreas to his liver – just because that process isn’t working properly. I mean, 70 to 80% of the kids that they know with the diagnosis don’t get past one. So she was devastated. I was devastated,” said Jace Bleyle.

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

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

They say they’ve lost count of the number of times primary children’s doctors and nurses have saved Emmett’s life.

He can neither walk nor speak and needs a feeding tube. Everyone who meets him, however, senses Emmett’s zest for life.

“He’s been lighting up the room since he was a baby. he is loving He wants to be with people. He’s very, very social,” said Jamie Seale, a registered nurse.

Seale has been taking care of Emmett since he was one year old.

When a child is diagnosed with a life-threatening illness or there is uncertainty about how long the child will survive, Primary Children's Hospital assembles a palliative care team – a group of professionals who care about every aspect of that child's life and their family as well.
When a child is diagnosed with a life-threatening illness or there is uncertainty about how long the child will survive, Primary Children’s Hospital assembles a palliative care team – a group of professionals who care about every aspect of that child’s life and their family as well. (Photo: Jace and Rylie Bleyle)

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

She is a member of the hospital’s palliative care team, which attends to the needs of both the child of unknown life expectancy and the patient’s family who remains in the hospital. This group includes doctors, nurses, child specialists, social workers and a chaplain.

“And that’s why we have to support these families, these 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 the isolation, the Primary Children’s Team has been there for the Bleyles.

“They have the saying that ‘not all heroes wear capes’ and I firmly believe that I’m at Primary Children’s Hospital,” said Jace Bleyle.

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


We want to ensure that the children have the best possible quality of life, that they can truly experience the joy and happiness that all children really should have.

–Jamie Seale, Nurse


Emmett is fine, his parents say.

“There’s something about him that people say, ‘He sees into my soul.’ Right, you know, he’s looking at you and you know he can’t talk to you, but he understands you,” Rylie Bleyle said.

The family recognizes the remarkable medical team and the care they receive from the hearts of Primary Children’s professionals.

With tears streaming down her cheeks, Seale said, “So let’s focus on this whole family and this whole kid. We want to make sure they enjoy as much as possible.”

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

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