PENSACOLA, Fla. — ALS has stolen nearly everything from him. His ability to walk, to hug his kids, to speak out loud and kiss his wife.

Following the 2017 diagnosis, 21-year Navy veteran Christopher Corleone of Pensacola spends his days paralyzed in a wheelchair, completely dependent on the people he once protected. He communicates using a device that tracks his eye movements.

Now, he’s using his diagnosis to fight for change, as the Corleone family is calling on congress to expand healthcare for military families.

Maiko Corleone, his wife of 29 years, has become his primary caregiver.

“Every day basically what I do myself without thinking, scratching, stretching — but my husband cannot do it,” Maiko says. “So I became part of his body and also voice.”

“If I don’t help him, he cannot live,” she adds.

The couple’s four children — Nicole, Sabrina, Michael and Vincent — also help every step of the way, because inside that stationary body is the man they’ve always loved.

Christopher requires round-the-clock care for even the most mundane tasks.

“Literally waking up every hour or every two hours just to do small things like adjusting his arms or suctioning his mouth,” Sabrina says. “Things that we can do on our own, but he just can’t. I think we’ve shown up for him in that way because even though we’re giving up hours of sleep or energy from our bodies, it’s to help him because he needs it.”

Christopher and Maiko say one of the hardest parts of handling ALS is the burden it places on young caregivers.

The couple’s eldest daughter, Nicole, lost her health insurance once she aged out of her father’s Tricare coverage.

She was caring for him full-time.

“It was more so around the time after I had graduated college and all this was still ongoing with my dad,” Nicole said. “And even to some degree, it got a little worse. I’m just very emotional and don’t know how to process it. So I really wanted to seek mental health help.”

But unemployed and uninsured due to caring for her dad, she couldn’t get that help.

When she lost her health insurance, Nicole says her mental health took a turn.

“I was starting to lose the ability to be that person in my family to help my dad, help my mom, be there for my sister and brothers,” she said.

Under current rules, most dependent children on Tricare lose eligibility at age 23.

Many young adults with civilian health insurance can stay on their parents’ plan until age 26.

That’s why the Corleone family is calling on congress to pass the “CHAMPVA Children’s Care Protection Act.” The bill would extend health coverage for eligible veterans’ children to age 26 — ensuring each Corleone kid is covered as they get older.

“It removes the impossible calculation of working enough hours to afford insurance while still having the flexibility to be a caregiver,” Christopher says. “This extension is a recognition that in military families affected by service-connected disabilities, the support network extends beyond the veteran to the children who serve as caregivers, too.”

Congressman Jimmy Patronis sent WEAR News a statement regarding the “CHAMPVA Act.”

He says he will “carefully review the legislation and ensure it appropriately addresses the needs of Northwest Florida veterans and their families”.

“Private insurance, especially for a young person with limited income, is prohibitively expensive,” Christopher said. “By extending CHAMPVA benefits to age 26, we wouldn’t just be providing healthcare. We would be giving our children the freedom to be both young adults and devoted family members.”

While ALS may have taken Christopher’s independence, he has not lost his family’s devotion.

“When I see my family’s sacrifices, I’m overwhelmed by their love and dedication,” Christopher says. “They’ve adjusted their lives significantly to support me.”

“Their sacrifices are not passive,” he added. “They are active choices to put their own lives, careers and dreams on hold. For that, they deserve far more than our gratitude. They deserve tangible recognition, adequate resources.”

And every day, together, they fight a battle they never expected.

“It is a blessing, a pure and simple blessing, to still be a part of their lives,” Christopher said.

The Corleone family hopes by sharing their own journey, they will help build support for legislation that expands healthcare coverage for military children nationwide.