‘We did everything we could’: Medically fragile child dies weeks before judge’s ruling

ALBUQUERQUE, N.M. (KRQE) – The state has 30 days to provide the promised home care for kids with life-threatening disabilities. A KRQE Investigation last year highlighted the problem that led to a legal fight. But this latest development comes too late for one family.

“We usually are starting the day with teary-eyed moments, but we’ll get through it. She wouldn’t want anything different,” Ben Cortez said of his daughter Amariz. She passed away on May 12 at just 10 years old.

“There is a peace – a peace that she lived fully and completely,” Mom, Alicia said. “A peace that we did everything we could.”

Doctors diagnosed Amariz with Rett Syndrome several years ago. It causes a lack of muscle tone and impacts brain development. The young girl also dealt with multiple sclerosis and epilepsy. The seizures were so severe, Alicia had to sleep with her hand on Amariz’s chest to confirm her daughter was breathing. Alicia said the number of seizures began increasing about six months ago.

“And we just saw over time, a consistent or continuous loss of skills, loss of cognition, loss of just being awake and alert,” Alicia explained. In April, they had to bring Amariz to the Emergency Room to try different medications to calm down the seizure activity. They soon learned her brain function would not improve.

With the rest of her body completely healthy, Amariz and her family decided to donate her organs. Her parents shared a video of the Honor Walk with KRQE, showing Amariz’s family, friends, and the hospital staff thanking their daughter. “It was such a sense of acknowledgment and recognition, not only for the fact that — just simply for the fact that she existed,” Alicia said. “That she existed and it was worthwhile.” “She mattered,” Ben added.

“It was unlike anything we could have ever imagined,” Alicia continued. “At first, we were kind of like, ‘Oh, no, we don’t need all that, right?'” Alicia jumps to that thought because her family is so used to caring for their daughter on their own. “There, most of the time, wasn’t space enough to think about how hard and how unfair and how much help we really did need,” she added.

Years ago, Alicia had to quit her job to become Amariz’s full-time caretaker. Though not medically trained, the family did not have any other options. Amariz needed eyes on her 24/7.

And although she’s one of about 250 New Mexico kids considered medically fragile and qualified for 40 in-home nursing hours a week through the Medicaid waiver program, their family never saw those hours fulfilled.

“Nobody wants to lose their child. But I’ll tell you what. It’s almost — It’s easier. It’s almost easier,” Alicia said. “What we were going through was much more difficult and straining and taxing on a day-to-day basis.”

Late last year, a KRQE Investigation detailed the alleged failure by the state to provide the Cortezes and two other families professional help to care for their special needs children. With attorneys from the Center on Law & Poverty and Disability Rights New Mexico, they filed a federal lawsuit claiming the Human Services Department is not providing in-home nurses as it’s legally required to.

“Good, bad or otherwise, you know, her passing is a testimony to the fragility of these kids,” Alicia said.

The state pointed to a nursing shortage as its defense. But, a judge just ruled the Human Services Department has 30 days to fulfill the hours the two other medically fragile children require. The preliminary injunction also revealed the Judge believes the families will likely be able to prove HSD violated the Americans with Disabilities Act.

“This precedes the pandemic. This has been an issue within the program that has just gone unnoticed and been swept under the radar. And, it just can’t anymore,” Alicia said.

While it stings Amariz is no longer here to accept the help, her family believes her passing had a purpose in helping other kids like her. “Is it too late? Bittersweet, of course, but Amariz just started. So we’re going to support her,” Ben said.

While this is a major win for the families, their case isn’t over. The trial is still scheduled, but a settlement could happen before then. Their attorneys are also working to make this a class action lawsuit, so any other family not receiving the in-home nurse service could join the suit.

New Mexico’s Human Services Department said it intends to comply with the judge’s recent ruling. The state agency could not give us an update on the program’s staffing shortage for in-home nurses. The full statement is below:

The New Mexico Human Services Department (HSD) intends to fully comply with the terms of the preliminary injunction issued by Judge Strickland and expects, ultimately, to prevail on the merits of this case. We continue to do everything we can to ensure children under the Medical Fragile Waiver receive all the services they need.  

At HSD, not only we are public servants, but mothers and fathers, members of the community, so we understand this is a difficult moment for the Cortez family and send our condolences. We are very sorry to hear about the passing of Amariz Cortez on May 12, 2023. At Court, Amariz Cortez’s lawyers did state that her passing, although unfortunate, was not related to the issues brought up in the lawsuit.   

Marina I Piña, Director of Communications