Idaho family celebrates Primary Children’s Hospital for the care they receive for 3-year-old Ollie

SALT LAKE CITY — Every moment the Judy family has with their three-year-old son Oliver, or Ollie, is a gift.

Ollie battles a rare genetic disorder, of which he’s only the forty-fifth patient to be diagnosed. There have been some close calls. However, his family stands by him with regular visits to Primary Children’s Hospital for treatment and regularly turns the challenge into a blessing.

When he meets people, Ollie draws people in with his smile and cute, red curls.

“He’s pretty much the joy to everybody,” Ollie’s mom, April Judy, said. “He makes bad days better. He’s the best snuggler.”

Judy drives four hours from Ammon, Idaho to PCH for Ollie’s appointment, a twice-per-month routine he’s endured since he was born. Judy was 20 weeks pregnant when she found out Ollie had a heart condition.

“We’ve gone through some pretty scary moments I won’t lie. We went through some genetic testing. We went and saw some specialists and finally ended up here at Primary Children’s Hospital in their cardiac unit.”

Doctors prepared a care plan and Ollie was born on March 3, 2020 at the University of Utah hospital.

“We’re very blessed our plan didn’t end up in the scary route,” Judy said.

More genetic testing led to a diagnosis of CDK-13, a rare genetic syndrome that causes congenital heart defects, and motor or language delays.

“He doesn’t have a lot of the same abilities that other kiddos have his age and he communicates in a different way, being nonverbal.”

In his short life, Ollie has had two heart surgeries and six brain surgeries, with the possibility of two more on the way.

“We’ve gone through a lot. There have been many moments when we didn’t know if we could go any further.”

Judy credits the caring team of specialists at Primary Children’s.

“They really focus on him as a person, and not just a patient.”

For Judy, connecting with other families going through the same thing gives her hope.

“They have a family Facebook page which has been super helpful. And everybody is very uplifting and supportive, and we ask questions and we get feedback,” Judy said. “Our goal is to help Ollie become the best Ollie that he can be,” said Judy. “And that’s just kind of our family mantra.”

Ollie’s four siblings are his biggest fans. They celebrate every moment they have with their hero.

“We don’t need to put time frames or a list of things that we need to get accomplished. It’s what are we going to do today and that’s what we’re going to be grateful for. We see a future with him,” Judy said. “And I know that is because of Primary Children’s Hospital.”