IDAHO FALLS, Idaho — Doctors in multiple states are searching for answers for a local 6-year-old girl, as the right side of her body appears to be shrinking.
In September, Valerie Jensen began complaining about her legs.
“At first I was like, OK, it’s got to be just growing pains,” Katelynn Jensen, Valerie’s mother, says. “Then it changed from every couple of days to every single night. She was just crying all night, and it wasn’t just regular pain. She would be limping around.”
One day, Katelynn noticed something new, and even more concerning.
“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.”
Soon after, Valerie was taken to see her first doctor, which marked the beginning of the medical mystery. According to Katelynn, the first set of doctors that saw Valerie had very few answers but tested her for many different things, including blood disorders and leukemia, which both came back negative.
“Her foot was getting worse, and all of a sudden it started showing atrophy, which is like shrinking,” Katelynn says. “Her foot, right now, looks very skeleton-like. She has, like, no muscle on her foot anymore.”
Throughout the testing, the only thing Valerie tested positive for was an autoimmune disease. Doctors then recommended that Valerie be seen at Primary Children’s Hospital in Salt Lake City. There, Valerie saw an orthopedic surgeon and discovered that her right leg was about an inch shorter than her left.
“Then she started getting these weird spots on her,” Katelynn says. “They’re like these patchy brown, scaly spots.”
Doctors recommended that Valerie see a rheumatologist as soon as possible.
“It was about a year on the waitlist,” Katelynn says. “Valerie’s doctor ended up calling the hospital, and they ended up pushing her through, and we saw them like two weeks later instead of a year later. They decided it was urgent because her muscle mass in her leg was decreasing.”
In November, the rheumatologist tested Valerie for several conditions but was still unable to reach a conclusion. Since that appointment, the Jensen family has been traveling back and forth between Salt Lake City and Idaho Falls nearly every week.
“Throughout December we kept seeing them, and they noticed that her leg was getting worse,” Katelynn says. “Her pain was getting worse, and we ended up seeing a dermatologist, as well.”
During the dermatologist appointment, doctors discovered that not only is Valerie’s right leg shorter than her left leg, but the entire right side of her body is smaller than the left side.
“That was pretty scary. Her ears are smaller; her hands are smaller; her arms are smaller,” Katelynn says. “What they’re calling it is that she has some sort of hemiatrophy.”
Hemiatrophy is a condition that causes the underdevelopment or shrinkage of one side of the body, according to the National Institutes of Health.
Even though doctors thought they had pinpointed a diagnosis, it didn’t explain all of her symptoms.
“This is where it gets kind of complex, because she’s showing signs of multiple things — like the skin patches, she’s showing muscle wasting, her bones aren’t growing — just a ton of different things,” Katelynn says, “but it’s not pinpointing to one thing specifically.”
Valerie’s doctors have recently enrolled her in a research program at the University of Utah, which they hope will provide the family with some answers. The study, however, will not be complete for multiple years.
“They take a DNA sample of hers, and they comb through the DNA to see if there’s anything missing, like chromosomes; and they go through all the letters of her DNA to see if there’s too much of something or not enough of something,” Katelynn says. “Then they take that and they put it in this pool of other people who are showing the same symptoms to try and determine if there’s some other disease that they’re not looking at for her.”
In the meantime, Katelynn says she, her husband and their young son are continuing to support Valerie as best they can while also praying for answers.
“As she’s worsening, we also noticed that she’s been having a hard time writing and reading,” Katelynn says. “So now they are looking at her brain, specifically, to see what’s next. The hemiatrophy can be caused by brain function not working, so it could be that the left side of her brain is not growing, or has stopped doing what it was supposed to be doing.”
The Jensen family recently started a GoFundMe, as both Katelynn and her husband, Dalynn, have had to take unpaid time off from work to support their daughter.
Click here to donate to the GoFundMe.
“Normally, (Valerie) is very outgoing — a lot of playing outside, riding her bike, doing all that fun outdoorsy stuff. She loves shopping; you know, all the girl stuff,” Katelynn says. “Obviously, lately she hasn’t been able to do any of that, which has probably been the hardest thing, I would say, that we’ve had to do, is just watching her decline.”
Report by Kaitlyn Hart, EastIdahoNews.com
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