Les Rogers: Fighting for His Daughter and the Disability Community

Gloria Rogers was born in September 2013 at full term, weighing 7 lbs. 13 oz. She struggled right out of the gate with breathing and feeding and spent most of her first hours on the incubator machine.

In the first months of her life, doctors discovered numerous challenges, from a galloping heart rhythm to pulmonic stenosis and an atrial septal defect.

It was during this time that her father, Leslie Rogers, a high school teacher and football coach, realized the family’s life was about to change. He had helped build his school from the ground up, but now he needed to leave it behind. The Rogers family relocated to Oregon to be closer to extended family and to ensure Gloria could receive the full-time care she needed.

When Gloria was 5 months old, she began experiencing seizures that grew longer and more dangerous. One lasted 10 minutes. As the family moved to Oregon, their hospital in Oakland, California, was closing, forcing a life-or-death decision.

“The seizures were changing and in the way they were presenting… and the doctor came in and said, ‘If you want your kid to live, you’re going to get on this air ambulance and you’re going to fly to Doernbecher Hospital in Portland, Oregon.’…You don’t really argue with the doctor at that point.”

Gloria’s doctors initially diagnosed her with partial seizures and prescribed Keppra. When the seizures worsened, without a second EEG, they changed her medication to Phenobarbital. That masked more complex seizures. The delays in proper diagnosis and treatment caused irreparable harm.

Eventually, doctors correctly diagnosed Gloria with infantile spasms and presented three treatment options. The first was a high-dose steroid called Prednisone, which came with many side effects. The second was Sabril, which carried the risk of blindness. The third was Adrenocorticotropic Hormone (ACTH).

ACTH “was approved in 1952 and sold for decades at less than $40 a vial. Today, however, a typical vial of Acthar is priced at $39,864,” according to a Drug Pricing Investigation by the House of Representatives Committee on Oversight and Reform.

Questcor Pharmaceuticals had increased the price drastically and pulled it from hospital pharmacies, making it accessible only through specialty pharmacies under their control.

“You have to have it. There’s no choice. You don’t have it, and your kid’s going to have massive brain damage and not be able to walk, not be… all the bad things, right? And so, you have to pay whatever the price is. You don’t have a choice… And I think that’s kind of at the heart of the problem when people say we’re going to have this for-profit health care system, that’s the trade off, right? If you’re having to tell people, ‘You’re going to die, or your kid, or your loved one, is not going to get the treatment they need because they can’t afford it.’”

In the week it took to get the medication, Gloria’s seizures continued. This delay in access—driven entirely by its inflated cost and restricted distribution—meant Gloria continued to feel the effects of those seizures for nearly a week, a stretch of time that ultimately left her unable to walk, tube fed, and dependent on suctioning to survive.

Amidst the daily challenges of keeping Gloria alive, the Rogers family was also forced to confront the financial burden of her care. They had Kaiser insurance and believed that by seeing a Kaiser doctor in a Kaiser hospital, they were financially covered. But the bills kept coming.

“Basically, we were wiped out,” Les said. “We sold my house and my car and liquidated our retirements and everything… We still owed. We were still paying out 1,000s. I remember when we got down to last 5,000, I was so excited.”

As Gloria’s condition stabilized, Oregon first evaluated her for the 1915(c) Medicaid waiver while she was still in the hospital, but she didn’t qualify. Later, she was assessed under the 1915(k)-state plan—known as the K Plan—and this time, she qualified. That changed everything.

For a time, Gloria required constant care. “Somebody has to be awake all night during the to do the suctioning,” Les explained. “I basically slept every other day for, I don’t know, six months or something, and we rotated between our relatives, but we also had medical bills, and I knew I had to get back to work.” Caring for Gloria left little room for anything else, and the strain on the family was mounting.

Until the K Plan allowed them to hire a caregiver.

They found a CNA who had previously worked in the hospital and was looking to care for just one patient. She began covering weeknights, giving the family the lifeline they needed. “It allowed me to go back to work and basically allowed us to dig out.”

Gloria eventually qualified for the Children’s Intensive In-Home Services waiver. It kept her home and out of institutional care, despite pressure from some hospital staff to place her in a pediatric skilled nursing facility.

The K Plan also allowed Gloria to enroll in Medicaid without placing the entire family on it. “The magic of that is that you take families off the bankruptcy treadmill in the disability community…and you basically allow them to stabilize.”

For the Rogers family, Medicaid is not just a safety net—it was a second chance. It allowed Les and his wife to return to work and contribute to their community. She remained one of the few speech therapists available to children with disabilities in their Oregon county of 100,000 people. Les, now working in education again, helped students with disabilities transition to adulthood.

With Medicaid cuts on the horizon, that stability feels more fragile than ever. Les explained that Oregon is no longer awarding grants until federal funds are physically in the state’s bank account, leaving many organizations in limbo. These disruptions, he said, “always land hardest on kids who lose resources and services they need.” Vocational rehabilitation in Oregon has begun rationing services and canceled its summer work programs for youth, Les shared, “I had 82 students ready to go… and now we might be able to serve 40.”

Les worries not just for his family, but for others like them. Without Medicaid, some parents may be forced to bring their children to hospitals simply because they cannot safely care for them alone.

He remembers a darker time before the Affordable Care Act when families facing medical bankruptcy adopted their children away to friends or relatives so the child could access insurance. “I worry we’re headed back that direction.”

Despite the uncertainty, Les continues the work. “I help my community. I help the families that we support… You saw it, they took away the funding for the program, and I did what I could to scrape together some money… to try to keep something going right for one more year.”

The Rogers family’s story is one of sacrifice, resilience and relentless advocacy—not just to keep their daughter alive, but to give her the best life possible. Through every setback, they’ve fought to stay together, to stay standing, and to ensure that Gloria, as well as the entire disability community, has the chance to thrive.