LAS VEGAS (KTNV) — A 4-year-old Las Vegas boy is battling Niemann-Pick Type C, a fatal disease affecting just 4 children in Nevada. His family is fighting insurance barriers, traveling cross-country for care.
Jordan and Jennifer Mitchell's home is filled with love. Their son Liam, just 4 and a half years old, is doing what kids his age do — giggling and playing. But inside his body, a race against time is underway.
VIDEO: Abel Garcia talks to the Mitchell Family about their fight for their son and rare disease
Liam is one of just four children in Nevada diagnosed with Niemann-Pick Type C, a rare neurodegenerative condition often called "childhood Alzheimer's." The disease slowly takes away a child's ability to walk, talk and even swallow, and it is always fatal. Without treatment, children with Liam's form of NPC may not live past age 5.
"When he was born, he had a lot of complications right from birth… and that helped us get to a diagnosis — as terrible as it is, we found out early," Jordan Mitchell said.
The family says they have seen progress through a careful regimen of medications and spinal injections. But keeping Liam stable comes at an extraordinary cost — between $1.3 million and $3.1 million a year — and the Mitchells say they have already faced pushback from their insurance provider.
"Knowing that these medications do work… but if the insurance says they're too expensive, that's it — that's not easy to live with," Jennifer Mitchell said.
When I asked the Mitchells about access to healthcare in Southern Nevada, Jordan was direct.
"The healthcare in the valley is not good for preventative or trying to treat these long-term problems," Jordan Mitchell said. "They ultimately said we couldn't figure it out… and ultimately we had to go out of state to get him treated."
Because Liam cannot fly due to his compromised immune system, the family makes cross-country drives to access treatment and research.
"We don't fly… we've done eight or ten drives to the Mayo Clinic in Minnesota, and now to the test sites in Chicago once a year," Jennifer Mitchell said.
Now, the family says hope is coming from a groundbreaking gene therapy study led by University of Iowa researcher Dr. Mark Schultz, which is showing promising results.
"We were able to prove that a gene therapy can cure Niemann-Pick Type C… we've funded a mouse liver study and we're in the process of publishing that work," Jordan Mitchell said.
To help fund that research, the Mitchells created a nonprofit — the Life for Liam and Friends Foundation — and host annual fundraisers in Southern Nevada.
"Don't give up hope. If you aren't trying, there's no chance you're going to get help… I am hopeful Nevada can improve healthcare so anyone can find the treatment they need," Mitchell said.
The Mitchells say they will keep pushing, keep driving and keep loving their son for as long as they can.
Because families like the Mitchells have struggled to find specialized care here, I reached out to find out what else is being done. A spokesperson with Intermountain Health told me their first stand-alone children's hospital planned for Southern Nevada will include neurology, with specialists on staff, when the hospital opens in 2030.
Meanwhile, 66 members of the Class of 2028 at the Kirk Kerkorian School of Medicine at UNLV received their white coats, marking their official transition from classroom studies to direct, hands-on patient care — a milestone that represents continued investment in building the next generation of doctors here in Southern Nevada.
If there's something you'd like me to look into, email me at abel.garcia@ktnv.com.
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