The family of a child with a rare genetic disorder grateful for primary childhood care

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Salt Lake City – When a child is diagnosed with a life-threatening illness or brings with it uncertainty about how long a child will survive, Children’s Primary Hospital creates a hospice team–a group of professionals to take care of every aspect of it. The life of the child and his family as well.

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

“He’s going through things I couldn’t even imagine happening, and he handles them with such grace,” said Emmett’s mother, Riley Bleil.

When he was only two and a half months old, Jess and Riley Bleil lived several anxious days at Children’s Primary Hospital. Then came the shocking diagnosis.

“You have a lot of things that affect almost his entire body — from his brain to his pancreas and liver — just because of this process that doesn’t work properly. I mean, 70 to 80% of the kids they know with don’t make him skip one,” Jess Pleil said. She was wrecked.

Emmett has an association with glycosylation, a rare genetic disorder. There are only about 1,200 cases in the world – 200 in the United States and only one in Utah – Emmett.

“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 a lot of questions, you know, very few answers,” Riley Blail said, regarding the research their doctors had to do.

They say they missed the number of times the doctors and nurses at Children’s Elementary School saved Emmett’s life.

He cannot walk or speak and needs a feeding tube. However, everyone who meets him feels Emmett’s enthusiasm for life.

He’s been lighting the room since he was a kid. He’s affectionate. He wants to be with people. He’s very social,” said nurse practitioner Jamie Seal.

Seal has been taking care of Emmett since he was a year old.

When a child is diagnosed with a life-threatening illness or brings with it uncertainty about how long the child will survive, Primary Children's Hospital creates a hospice team - a group of professionals to take care of every aspect of that child's life and life.  family as well.
When a child is diagnosed with a life-threatening illness or brings with it uncertainty about how long the child will survive, Primary Children’s Hospital creates a hospice team – a group of professionals to take care of every aspect of that child’s life and life. family as well. (Photo: Jess and Riley Blail)

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

She is a member of the hospital’s palliative care team, which meets the needs of a child whose life expectancy is unknown, as well as the needs of the patient’s resident family. This group includes doctors, nurses, child life specialists, social workers, and a chaplain.

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

During COVID-19 and isolation, the kids’ core team was there for the Bleyles.

“They have that saying ‘not all heroes wear a cap,’ and I totally think being in the hospital is in kids’ elementary school,” said Jess Bilyel.

“They’re the people who are, like, kind of there, to pick up your pieces. Because you can’t do it yourself, you know, and so they’re literally second family,” said Riley Blail.


We like to make sure that children have the best possible quality of life, and that they can truly experience the joy and happiness that all children should truly have.

– Jimmy Seal, nurse practitioner


His parents say Emmett is thriving.

“There’s something about him that people are just like, ‘He sees my soul.’ Well, you know, like, he’s looking at you, and you know he, like, can’t talk to you, but he understands you,” said Riley Bleil.

The family credits the wonderful medical team and care it receives from the hearts of essential pediatric professionals.

“So we want to focus on that whole family and this whole baby,” Ciel said, tears running down her cheeks. “We want to make sure they get as much joy as possible.”

“Joe” is the word his nurse and parents use to describe Emmett. They say, that’s what they want for him and what he presents to the world.

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