Local 6-year-old a ‘medical mystery’ as doctors try to diagnose her shrinking body

IDAHO FALLS — A local family is begging for answers after doctors discovered the right side of their 6-year-old daughter’s body is shrinking, her reflexes have disappeared, and something is causing her severe pain.

EastIdahoNew.com shared Valerie Jensen’s story last month. The young girl first started complaining about her legs in September, according to her mom, Katelynn Jensen.

Thinking it was growing pains, the family tried to relieve her symptoms until one day, they noticed her toe was discolored. About a week later, she had bruises covering her legs.

“She was getting ready for the shower, and I took off her socks, and I noticed that her toe was a different color,” Katelynn says. “It was like this weird purple color, and she had bruises all over her legs from her knees down.”

RELATED | The right side of this 6-year-old’s body is shrinking. Her family is raising money to find out why.

Now, the entire right side of Valerie’s body is shrinking, causing her excruciating pain.

Doctors across multiple states have theorized that Valerie could have many different conditions, such as hemiatrophy, a condition that causes the underdevelopment or shrinkage of one side of the body, according to the National Institutes of Health.

But still, there has been no final explanation to explain her other symptoms, such as the discoloration, bruising, and immense pain the little girl continues to go through.

Last month, the family continued to search for answers, driving down to Primary Children’s Hospital in Salt Lake City nearly every week. Since our last report, things have only gotten worse.

“We were just in Salt Lake, and she had multiple scans done, and they said everything came back normal,” says Jensen. “Now, we’re just waiting on genetics testing, which can take months.”

Jensen says Valerie spends most of her days asleep, and when she is awake, she is in pain nearly every moment.

“She’s been sleeping a lot more, pretty much like three-quarters of the day, she’s asleep,” Jensen says. “Before, we could maybe get her to go around the e block riding her bike, and now, we don’t even make it around the block. She’s just exhausted, and her pain level is just…her pain medication hasn’t been working either.”

According to Jensen, doctors recently discovered that Valerie has lost all of the reflexes on the right side of her body.

“She still has muscles, but nothing else,” Jensen says. “(Valerie’s doctors) are trying to push a neurologist to take her sooner. They said that they wouldn’t be able to get her in until almost December, which is insane. If we keep waiting, it’s just going to get worse than it already has in the last five months.”

According to a GoFundMe, Valerie was able to get a neurology appointment within the next few weeks, but there are still a lot of questions until then. Doctors are discussing the possibility of sending Valerie to the Mayo Clinic, in hopes of seeing other specialists who might know what is going on with her body and how to help.

“It’s been a lot, especially this past week. I feel like we’re not getting anywhere. Someone, somewhere has got to know something,” Jensen says. “The further reach we can get, hopefully someone will pick up (the story) and be like ‘Maybe I know what this is?”

Watching Valerie deteriorate is the hardest part, says her mom, as she continues to lose weight due to whatever is causing her ailments.

“She’s progressively getting worse, that’s the biggest thing. And she’s lost more weight. They weighed her today, and she lost more weight than she already has,” Jensen says. “Right now, we’re just living on hope that someone will figure it out.”

Between medical bills, travel costs, and needing to miss work to be with their daughter, Valerie’s parents say the bills are stacking up.

To try and continue their search for answers, the Jensen family started a GoFundMe, after they were forced to take unpaid time off work when Valerie became ill.

Not only are they raising money to pay off medical bills, but now they are also raising money after their car’s transmission went out.

“We’re now talking about having to travel, possibly by plane and missing more work and all of that,” Jensen says. “We feel like we’re getting hit from every side and just not finding answers.”

Click here to donate to the GoFundMe.

A local business, Get Pierced Co., is also raising money for the family, according to Jensen.

On Feb. 25, the piercing studio in Idaho Falls will offer 15% off services with the online code PURPOSE. 100% of the proceeds from the day will go toward the Jensen family.

“She’s wasting, in a way,” Jensen says. “It’s a lot to take in mentally. Seeing her go from this happy kiddo all the time…now she’s got bags under her eyes, and she has that sunken, sickly look to her. It’s been tough seeing her that way.”