Kearns teen battles rare, incurable disease to return to softball diamond

Posted at 10:14 PM, May 14, 2016
and last updated 2016-05-15 00:14:09-04

KEARNS, Utah – A Utah family spent more than a year and a half at Primary Children’s Hospital facing terrible uncertainty after their daughter was diagnosed with a rare and incurable disease.

The Valdez family said their world was turned upside down by the diagnosis, but now their daughter is back on the softball field after the hardest year of her life.

“I thought I was going to give up, honestly, like, I never thought I’d be out here, back on the field, doing what I love again,” Harlie Valdez said of the ordeal.

After seeing her out on the diamond, you wouldn't know that 14-year-old Harlie couldn't walk just six months ago, or that she was diagnosed with a rare, incurable disease.

“It just happened overnight, and our world just changed,” said Stephanie Valdez, Harlie’s mother.

Before she got sick, Harlie was known for her athleticism, traveling around the state with her softball team. But things changed right before September 2014.

“She started losing her vision, really tired, walking floppy, her feet just flopping,” recalled Gabriel Valdez, Harlie’s father.

Harlie’s coach, Ken Isakson, said it was tough to see Harlie endure those struggles.

“Oh, it was devastating,” the head softball coach at Kearns High School said. “It was devastating to see her decline, rapid decline, very quickly.”

Harlie and her parents spent a year and a half at Primary Children's Hospital, sitting and waiting for answers and undergoing test after test.

Doctors eventually figured out she had a rare disease called juvenile dermatomyositis, which is a disease involving inflammation of the muscles and skin.

“Well you go from being fully active, to being in a bed where you can’t sit up, you can’t walk, you can’t eat, you can’t roll over by yourself, you can’t do anything,” Gabriel Valdez said. “That’s how bad it affected her muscles.”

Stephanie Valdez said it was trying time.

“I think there was a couple times that she was wondering if she was going to make it out of this,” she said.

The grief spread beyond the Valdez family.

“Everyone was just in shock, and we were all so heartbroken, and it was really tough journey for all of us, not just Harlie,” teammate Tristin Evans said.

But, relying on strength from her family and the Kearns softball community, Harlie worked to overcome the breakdowns.

“We have had so much support, prayers, I think that was so huge,” Stephanie Valdez said. “They did a candlelight vigil for her.”

Harlie said that support was a powerful asset: “They’d say, ‘Stay strong for me. You’re my hero,’ and I’d just get that good feeling in you, you know?”

Once she got out of the hospital, Harlie hit the practice field, even when she wasn't feeling up to it. Her ultimate goal was to get back to where she left off.

“She has really proved herself,” Coach Isakson said. “She’s healing every day that she’s here. She doesn’t miss a practice, she works hard during practice, and she’s on the field.”

With the whole community behind her, Harlie spends her days doing what she loves and treating every day as a blessing.

“Everyone on our team feels inspired by Harlie and her battle back,” Tristin said.

Gabriel Valdez said the progress they’ve seen their daughter make is thrilling.

“In November she was in a wheelchair, and, now to see her back on the field doing what she loves, it's amazing," he said. "It’s like heaven.”

Harlie said she's currently in remission and doesn't know if her symptoms could flare up again in the future. She goes for treatment once a month at Primary Children’s Hospital.

Her parents say they're just happy she can finally do what she loves, and they appreciate every day with her.