Doctors stumped as local 6-year-old’s body continues to shrink. Here’s what you can to to help

IDAHO FALLS — After more than six months of excruciating pain and medical testing, a local six-year-old and her family still have no answers, but many more questions.

Valerie Jensen has been bravely powering through multiple undiagnosed medical issues including bone atrophy on the right side of her body, various recurring infections, and intense pain.

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

“We are officially six months in with no answers,” says Katelynn Jensen, Valerie’s mother. “The pain is still there, and the atrophy is still there. She’s definitely having a harder time.”

In September, Valerie began complaining about leg pain. Her mother also noticed toe discoloration and unexplained bruises covering her legs.

Soon, the pain and odd symptoms intensified to the point where she was taken to Primary Children’s Hospital in Utah for more advanced testing.

EastIdahoNews.com has been sharing Valerie’s story since January, with an update in February that nothing had improved but that the family was hopeful they would learn more soon.

Since then, doctors around the world have been working to help Valerie and determine what is causing the one-sided limb changes. And now, there are more symptoms.

In late February, Valerie was seen at Shriners Children’s Hospital in Salt Lake City. Katelynn says the doctors couldn’t find anything wrong with Valerie, and sent her home.

“Since all of that happened, we’ve done more testing with Valerie, and she’s had two more MRI’s since then, and we recently just got her a shoe lift,” Jensen says.

Recently, Valerie was approved for a leg-length discrepancy test to determine whether her right leg is shrinking or her left leg is growing too fast. They haven’t received the results yet.

“When all of this started, (Valerie’s right leg) was a half a centimeter short, and now she’s almost .9 centimeters short (on one side),” says Jensen. “So it’s gotten worse, which is what we kind of expected.”

Doctors also tested her spine and hips, checking them for abnormalities, and found nothing.

After confirming that Valerie still has no reflexes on the right side of her body, the Jensen family traveled again to Salt Lake City for nerve and genetic testing, which yielded discoveries but also raised more questions.

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

“The neurologist was totally shocked,” says Jensen. “She thought for sure that during the nerve testing we would see something, and they didn’t.”

Doctors discovered that Valerie is missing Chromosome 15, which, according to Valerie’s doctors, is essential for learning and mental development, something Valerie has also been struggling with since the onset of her limp pain and growth issues.

“They’re wondering if maybe that could be related to why she’s struggling so hard in school,” says Jensen. “But it doesn’t make sense because it was so sudden. They said if it was affecting her, she should’ve seen it earlier on.”

Doctors also found what Jensen calls a “damaging gene” that is affecting the proteins on Valerie’s B cells, which help to express antibodies to protect her from illness.

“A lot of the time, people who have that marker have a disease called C-VID (Common Variable Immunodeficiency), where basically they just can’t build antibodies against things, which causes chronic infections,” says Jensen.

According to Valerie’s mom, this could be an answer for some other medical problems Valerie has had her entire life.

For the last four days, Valerie has been fighting a double ear infection, strep throat, and a very high fever – something she has dealt with much too frequently.

“She’s had eight ear infections since December, she’s had six sets of ear tubes put in,” Jensen says. “If she has this, it will be a lifelong thing of getting plasma transfusions.”

Even if Valerie is diagnosed with this, that doesn’t answer any of the questions about her limb pain, bruising, or atrophy.

A bright spot of hope for the family came recently, when the Children’s Hospital of Philadelphia’s Children’s Miracle Network reached out to them after hearing about Valerie’s medical issues and offered their expertise.

“It’s been crazy, it took me like three days to fill out all of the paperwork for them,” says Jensen. “Basically, they’re taking all of her information, going through it, and they are going to see if she qualifies for a complex disease case.”

If the researchers believe they may have answers, the hospital has agreed to fly the family out there for additional testing, in hopes of getting a diagnosis.

“During all of this, we’ve just been on the go, we’re still doing the regular appointments and everything,” Jensen says. “Right now, she’s very sick.”

Even through the long doctor’s visits and strenuous medical tests, Jensen says her daughter is still trying her best to live a normal, fun childhood.

“The other day, she really, really wanted to go on a bike ride. We made it a little way around the block, and then she got off her bike,” Jensen says. “I was like, ‘Hey, are you good?’ and she’s like, ‘I’m fine, I just needed a break.’ So now, she’s starting to not tell us when she needs a break because she wants to play, and she wants to do things with her friends.”

Jensen says recently, Valerie was invited to a friend’s birthday party at a gymnastics center, and became upset at the thought that she wouldn’t be able to attend due to her limitations. But Valerie’s mom says their family is doing everything possible to keep her life as normal as can be.

“She sat at home and cried and cried because she thought I was going to tell her that she couldn’t go,” Jensen says. “I had to call the mom (of the friend) and explain our situation, and then we let her go. The other parents helped us manage her while she was there, but we’ve been trying not to let people treat her any differently.”

Fundraiser for Valerie’s fight to find a diagnosis

Friends and family of the Jensen’s are organizing a fundraiser on Saturday, April 25th, at the Off Ramp Bar & Grill in Rigby, to raise money for Valerie’s medical bills and the cost of travel to and from appointments.

There will be a live auction, raffles, and dinner included with a donation.

A ticket is $20 and includes one raffle entry and dinner; a $50 donation includes three raffle entries and dinner.

Scan the QR code, or send a Venmo payment to @Kaztelynn-Jensen to donate money and receive a ticket.

The main auction item is a Ruger 308 rifle, with a long-range scope and a bronze barrel.

There will also be baskets full of items donated from local businesses available to be bid on.

The Jensen family also has 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.

The post Doctors stumped as local 6-year-old’s body continues to shrink. Here’s what you can to to help appeared first on East Idaho News.