SANDY — When Alta High head coach Kristi Jensen first watched Chloe Ferre play basketball as a freshman, she saw a talented player who wasn't working very hard.
"It just seemed like she wasn't pushing herself," Jensen said. "When we'd condition, I'd really get on her."
She even pulled Ferre, now a junior, aside in that first season and urged her to give more on the court.
What Jensen didn't know was that Ferre was in almost constant pain due to a rare disease called mixed connective tissue disease. The coach didn't know Ferre was in severe pain because Chloe wasn't really sure what was the trouble was.
"She got really mad at me because she thought I wasn't trying," Ferre said with a smile. "She was a stickler on working hard, and I was frustrated because I felt like I was going hard. I didn't really understand what was going on."
It wasn't until Ferre's mom asked her why she was moving so slowly that Chloe told her mom she was hurting. They took the teen to Primary Children's Medical Center for myriad tests that revealed the complicated, life-altering disease.
"I thought she was being a lazy teenager," said Aimee Ferre. "And then one day she told me, 'My joints hurt so bad.' She couldn't even walk up the stairs."
A couple of days later, Chloe blacked out at practice after experiencing pain and trouble breathing. Chloe said the pain in her hand was so severe, she knew it wasn't normal.
"We had no idea," said her mom. "She'd been experiencing joint pain for almost nine months, and by October, it was so bad she could barely walk."
Ferre was lucky in the sense that doctors were able to diagnose her disease much more quickly than most who suffer from MCTD, which is often called "overlap disease" because it involves several different diseases, including myositis (inflammation of the muscles), scleroderma and arthritis (joint swelling and pain). It is a disease as difficult to describe as it is to treat.
Doctors put her on medication, but warned her it would take months before they would begin to bring her relief from the symptoms that meant limited time in junior varsity games.
"It wasn't until Spring Fling that she started to feel better," said Jensen. "She really suffered through her whole freshman year."
As a little girl, Chloe dreamed of playing college basketball.
Now she prays for pain-free days.
"That was always my goal, what I worked for," said Chloe. "But I'm not sure I'd be able to make it through it. I'm not sure the coaches would be as understanding as (Alta's). ... I'm not sure I feel like it's worth it."
Jensen is heartbroken for Ferre, but also admires her determination to compete at a high level in high school.
"She works so hard,' said Jensen. "It's unfortunate that it had to be her. Basketball-wise she's so talented. She's been coming to my camps since she was in fifth grade. She's always had the natural ability. She has a great attitude, loves to play, and gets really frustrated when she can't do what she wants. She's a great kid to have on your team. ... She can shoot the lights out, very gifted."
Chloe admits that when the disease is so bad she can't get out of bed, she misses what might've been.
"Sometimes on really bad days those (negative) thoughts come to me," she said. "But then I think, 'At least I can still play now.' It could be much worse."
The disease may have stolen one dream from Ferre, but she says it has also blessed her.
"It has strengthened me so much in so many areas of my life," she said blushing because it is not her nature to share such intimate details with a stranger. "It's really strengthened me spiritually. I've really had to rely on prayer. And my dad gives me (LDS) blessings. It has changed my life for the better. So I'm not sure I'd give it back."
Ferre said her symptoms tested her faith in ways she never expected. A member of The Church of Jesus Christ of Latter-day Saints, she recounts the Hawks' opening-round playoff game against Davis last season.
"The night before I had a really bad flare-up," she said. "Usually they last for four or five days."
She asked her father for a blessing, and not only was she able to play the next day, but she led the Hawks' offense with 24 points.
"Multiple things like that have happened," she said.
Her mom said her performance was more than a blessing. "It was a miracle," she said. "And it's a miracle that she's able to play right now, at this moment."
Aimee Ferre said she's watched her daughter grow in her LDS faith, even writing scriptures on her arms before each game.
"She won't ever let us read them," said Aimee, adding that there have been other blessings, including the help of a teammate's father who is helping her mitigate the symptoms with nutritional changes, including the elimination of dairy. "She does so much of it privately."
Chloe isn't the only one who had to adjust her expectations after the diagnosis. It has been agonizing for her parents to watch their formerly active, healthy daughter suffer on the sidelines with pain or breathing issues.
"We had dreams of scholarships for her," said Aimee Ferre. "We don't know what's going to happen with Chloe. She's just not a normal kid."
Chloe is also very private, even reluctant to discuss her suffering.
"She doesn't want special treatment," said her mom. "She doesn't want anyone to think she's making excuses."
The future may be uncertain for Chloe, but both she and her parents are grateful for the miracle they enjoy today.
"I do appreciate every time she plays," said Aimee. "It has changed so much of our perspective."
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