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

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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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Retirees Sandra and George Stewart began building their forever home in 1977, in a neighborhood off of Sahara Avenue and Jones Boulevard. They have lived there ever since.

George Stewart, a Vietnam War vet, said homeownership was a welcome prize for his service.

Now, there’s only one problem — the house’s septic system. When it was built, sewer lines did not exist in that part of Las Vegas, and the Stewarts say they now face pressure from local agencies to spend hundreds of thousands of dollars to tap into the city sewer system so that the water they use can be recycled and sent back to Lake Mead.

“We’ve worked really hard and paid off our house,” Sandra Stewart said. “Then we retired, and now we’re on a fixed income. There is no way we can afford this. We’ll end up selling our dream home.”

The Stewarts were two of at least a hundred Las Vegas Valley residents who spoke to officials Wednesday during the public comment section of a special board meeting of the Southern Nevada Health District.

Board members, including several public officials from across the valley, unanimously voted to rescind proposed regulations for about 18,000 septic systems in the valley. More than 1,000 people showed up to a public outreach meeting last month to express their dissatisfaction with any change to current regulations.

Though not under consideration at Wednesday’s meeting or the last one, a previous version of the rules could have required homeowners to apply for a permit every five years for $226.

“All I want to say is I am very sorry,” said County Commissioner April Becker, following an hour of public comment that even included a caller from Sandy Valley. “I‘m thankful that you came out every single time. And as painful as these meetings are for me, I’m just happy I’m here right now to be able to vote the way you want me to.”

Water savings, but a supposed health issue, too

Southern Nevada agencies have long pushed for homeowners to consider tapping their homes into the larger wastewater recycling system in the face of what scientists call a “megadrought” that hasn’t let up in two decades.

Assembly Bill 220, signed into law in 2023, gave the Southern Nevada Water Authority the broad legal power to limit residential water use. The bill originally contained a provision that would have required septic-to-sewer conversions but was later amended to make the conversions voluntary.

The water authority has limited funds available to offset the cost of conversions should homeowners wish to apply. Available grants could cover the entire conversion, or at least a good portion of it.

Many homeowners who spoke, like Las Vegas resident Greg Austell, said they see the supposed water savings the region would gain from conversions as a thinly veiled attempt to facilitate the valley’s uncontrolled growth.

“It’s driven politically by the Southern Nevada Water Authority to get water credits,” Austell said. “Why? So we can increase expansion of the valley during a severe drought, which makes no sense. Water is essential to live. Why are we expanding?”

Southern Nevada’s water managers have said that growth is inevitable and necessary to stimulate the economy. Accommodating growth is built in to the region’s long-term water plans, which get updated yearly.

While Las Vegas City Councilwoman Shondra Summers-Armstrong voted with her colleagues on the board and said she admired the community’s persistence, she emphasized that the issue of septic-to-sewer conversions must be re-visited in the future.

“At some point, we’ve got to find a way to come to a happy medium, or a compromise,” she said. “Water is a real issue, and none of us will be able to remain living here without it.”

Contact Alan Halaly at ahalaly@reviewjournal.com. Follow @AlanHalaly on X.

LAS VEGAS (FOX5) — Smith’s employees are packing 5,000 meal kits for Clark County students through a partnership with Move for Hunger and Communities in Schools of Southern Nevada.

The event took place on March 10 at Decker Elementary School.

About 270 leaders from across seven states are also participating in building the kits. The donation is valued at approximately $50,000.

Feed The Need: Helping Southern Nevadans fight food insecurity

In the past year, Smith’s and its customers provided more than 16 million meals to nonprofit hunger-relief organizations throughout Nevada through donations.

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