Idaho 6-Year-Old Battling Undiagnosed Medical Mystery as Family Seeks Answers and Support
IDAHO FALLS — Six months after her symptoms first appeared, a six-year-old Idaho girl and her family remain without answers as doctors across the country continue searching for the cause of her deteriorating condition. Valerie Jensen, of Idaho Falls, is experiencing bone atrophy on the right side of her body, recurring infections, loss of reflexes, and intense pain — and no physician has yet been able to explain why.
“We are officially six months in with no answers,” said Katelynn Jensen, Valerie’s mother. “The pain is still there, and the atrophy is still there. She’s definitely having a harder time.”
A Growing List of Symptoms, A Shrinking Right Side
Valerie’s ordeal began in September when she started complaining of leg pain. Her mother soon noticed toe discoloration and unexplained bruising covering her legs. As the symptoms intensified, the family sought more advanced care at Primary Children’s Hospital in Utah. Since then, doctors around the world have been consulted, yet each round of testing has produced more questions than answers.
The most visible and alarming symptom remains the progressive shrinking of Valerie’s right leg. When the problem first emerged, her right leg measured a half centimeter shorter than her left. That gap has since nearly doubled.
“When all of this started, it was a half a centimeter short, and now she’s almost .9 centimeters short on one side,” Jensen said. “So it’s gotten worse, which is what we kind of expected.”
To help with the discrepancy, Valerie has recently been fitted with a shoe lift. She has also undergone two additional MRIs, and doctors have tested her spine and hips for abnormalities — finding nothing. A leg-length discrepancy test was recently approved to determine whether her right leg is shrinking or her left is growing too fast. Results have not yet been returned.
Perhaps most puzzling to her neurologist: Valerie has no reflexes on the right side of her body, yet nerve testing revealed nothing abnormal. “The neurologist was totally shocked,” Jensen recalled. “She thought for sure that during the nerve testing we would see something, and they didn’t.”
Genetic Discoveries Raise New Questions
Recent genetic testing brought both discovery and added complexity. Doctors found that Valerie is missing Chromosome 15, which her physicians say is essential for learning and mental development — an area where Valerie has also been struggling since the onset of her symptoms. However, her doctors noted that the timing does not fully align, as such an absence would typically have shown effects much earlier in life.
Testing also identified what Jensen described as a “damaging gene” affecting the proteins on Valerie’s B cells, which are responsible for producing antibodies that protect against illness. Doctors have suggested this could be a marker for Common Variable Immunodeficiency, or C-VID — a condition in which the body cannot build adequate antibodies, leading to chronic infections.
“She’s had eight ear infections since December, she’s had six sets of ear tubes put in,” Jensen said. “If she has this, it will be a lifelong thing of getting plasma transfusions.”
Even if Valerie is diagnosed with C-VID, that diagnosis would not explain the limb atrophy, pain, or bruising that have defined her condition since September.
At the time of this report, Valerie was battling a double ear infection, strep throat, and a high fever — all at once — continuing a pattern of frequent illness that has placed enormous strain on the family.
Philadelphia Children’s Hospital Offers a Lifeline
A meaningful development came recently when the Children’s Hospital of Philadelphia’s Children’s Miracle Network reached out to the Jensen family after learning of Valerie’s case. The hospital is now reviewing all of Valerie’s medical information to determine whether she qualifies as a complex disease case.
“It’s been crazy, it took me like three days to fill out all of the paperwork for them,” Jensen said. “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 hospital’s researchers believe they may have answers, the family has been told the hospital will fly them to Philadelphia for additional testing — a potential turning point in a case that has defied explanation for half a year.
In the meantime, the Jensen family continues managing routine appointments while caring for a child who is, by her mother’s description, very sick. The community has rallied around Valerie before, and the family continues to welcome support as the search for a diagnosis continues. Those wishing to follow Valerie’s story or find ways to help can search for updates shared by the family online.
Southeast Idaho communities have shown a strong tradition of supporting families facing hardship. That spirit was on display recently when a beloved local art teacher was surprised in front of her entire school in a Feel Good Friday celebration — a reminder of the tight-knit nature of Idaho communities when one of their own needs support.
What Comes Next
The Jensen family is awaiting results from Valerie’s recent leg-length discrepancy test. The Children’s Hospital of Philadelphia is reviewing her case and will notify the family if she qualifies for a complex disease evaluation, which could include a trip to Pennsylvania for additional testing. Genetic counselors are also expected to provide further guidance on the Chromosome 15 finding and the potential C-VID diagnosis. Bannock County News will continue to follow developments in Valerie’s case as new information becomes available. For statewide health and community coverage, visit Idaho News.