OPINION: My 2-year-old son is recovering from brain surgery. Health insurance says they won’t cover the therapy.

A North Carolina family says they’ve been forced to make heartbreaking choices because of health insurance companies who won’t pay for the care their son needs. 

When my infant son Levi needed brain surgery, our insurance deemed it “not medically necessary.” 

We fought that battle by uprooting our entire lives in Elizabeth City, NC, and moving to Massachusetts, where state insurance covered his life-saving procedure. Now, just a little over a year into his recovery, we’re facing another insurance wall: They’ve decided to stop covering his essential therapies—physical, occupational, and speech. These services are crucial to his development and recovery.

The monthly cost to continue these therapies out of pocket? $6,180.

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Let that number sink in. That’s more than many Americans’ monthly mortgage payments. More than a semester at some colleges. More than what many families bring home in a month. And this isn’t a one-time expense—it’s a recurring cost for services my child needs to thrive.

This isn’t just a policy issue—it’s a moral crisis. Every denial letter, every insurance rejection, every family forced to choose between medicine and food exposes the fundamental brokenness of our healthcare system.

This is what “healthcare” looks like in America: a system where insurance companies play Russian roulette with children’s lives and development, where corporate spreadsheets dictate medical decisions, and where families are forced to choose between financial ruin and their child’s well-being.

We’re not talking about elective services. These therapies are vital for Levi’s development. He was diagnosed with TBI (traumatic brain injury) and hydrocephalus (fluid in the brain). Physical therapy helps strengthen his muscles and improve his mobility. Occupational therapy teaches him essential life skills. Speech therapy helps him communicate and eat safely. These aren’t luxuries—they’re fundamental needs for a child recovering from brain surgery.

But here’s what the insurance industry doesn’t want you to understand: When they deny coverage for preventive and rehabilitative care, they’re not just affecting immediate health outcomes—they’re potentially creating more severe and costly medical issues down the line. It’s a short-sighted approach that prioritizes quarterly profits over long-term human welfare.

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During our previous battle with insurance, we met other families in similar situations. 

I think often about Sam and Maria, whose child died because they couldn’t afford to leave their jobs at a chicken plant to seek treatment. They represent countless American families forced to make impossible choices between work, healthcare, and survival.

Our story isn’t unique—it’s just one example of a systemic failure. Across America, families are drowning in medical debt, fighting insurance denials, and watching their children suffer while corporations post record profits. The same insurance giants who deny children’s therapy claims pay their CEOs millions in compensation.

(Photo via Linea Johnson)

We’re the wealthiest nation in the world, yet we’ve built a healthcare system that treats children’s medical needs as luxury items. A system where “coverage” doesn’t mean actual care, where “insurance” doesn’t ensure anything, and where families must launch GoFundMe campaigns to afford basic medical services.

This isn’t just a policy issue—it’s a moral crisis. Every denial letter, every insurance rejection, every family forced to choose between medicine and food exposes the fundamental brokenness of our healthcare system.

I share our story not for sympathy, but as a call to action. We need systemic change. We need healthcare that prioritizes human lives over profit margins. We need a system where “medical necessity” is determined by doctors, not insurance adjusters.

Until then, families like ours will continue fighting—because we have no other choice. But we shouldn’t have to.

How many more families must be broken before we fix this system?​​​​​​​​​​​​​​​​