GOLIAD - Seven times a day, Brittany Cabrera gives her 7-month-old daughter medications and prays they do more good than harm.

"When she's having a seizure, I'm always thinking, 'Is this the one that's going to hurt her or kill her?'" Cabrera said.

Penny Cabrera has a rare X-linked genetic disorder, called CDKL5, which can cause difficult-to-control seizures and severe neurodevelopmental impairment.

In recent weeks, Penny has had fewer seizures and is able to recover better afterward.

"It's just a day-by-day thing," Cabrera said.

There is no cure, and researchers still don't know what causes the genetic mutation that was first identified in 2004.

As much as she and her husband of two years, Dustin Cabrera, had carefully planned for their first child, they couldn't have known about CDKL5.

The mutation is not passed down through family members and affects an estimated 1,000 people worldwide.

Just a few weeks ago, the couple, both 22, considered whether they should pack up and move to Colorado in hopes Penny could get the comprehensive medical care she needs.

The family hopes they won't have to make that choice, but they are committed to doing what's best for Penny.

Brittany Cabrera smiles at her daughter, who coos and slowly rolls over on a soft pink blanket.

The room's walls are painted light pink, and natural light pours in from a window.

One wall in the nursery has cards, a schedule of upcoming doctor's appointments and an official letter signed by Gov. Greg Abbott.

The Texas governor proclaimed June 2016 as CDKL5 Awareness Month after Brittany wrote to him.

The letter reads, "In Texas, we know that it is not our challenges that define us but rather how we rise above them."

Abbott commended her for her advocacy.

Cabrera frequently posts about Penny's daily struggles and triumphs online, garnering support and encouragement.

"Thank God for Facebook," she said, sitting on the floor of a home that's been in her family for generations.

She was never really into social media, she said, but after Penny's diagnosis, she was looking for answers.

She joined a closed Facebook group, looking for hints about what her daughter's future would be like.

Cabrera remembers vividly the first time she saw her daughter have a seizure.

Penny was 2 months and 8 days old.

A first-time-mother, Cabrera had hoped she was overreacting.

It was 4 a.m. when Penny started crying in her bassinet near her parents' bed.

Cabrera swaddled her daughter, and they went back to bed.

At 9 am., Penny started having a stronger seizure.

Cabrera had never actually seen a seizure aside from what's seen on television.

She called the pediatrician's office, and a nurse suggested her newborn was experiencing infantile spasms.

"It didn't look right," she said, remembering that at some point she went to her parents' house next door.

The family rushed to a Victoria emergency room to get Penny checked out, but they just monitored and released her.

"It was happening every hour," she recalled.

The seizures didn't stop, and the family decided to take Penny to Texas Children's Hospital in Houston.

"It was just horrifying because you can't do anything," she said. "You don't know what to do."

She started having a seizure while they were in the waiting room and was quickly admitted.

They were at the children's hospital for two weeks, and the doctors determined she was epileptic.

The results of a genetic test confirmed eight weeks later that Penny has CDKL5.

Cabrera remembered in that moment, she felt defeated.

Because this was part of her DNA, surgery was not an option, and Penny would most likely deal with seizures that affect her brain for the rest of her life.

Penny's doctors considered putting her on a third medication, but after they decreased the dosage on her other two medications, she seemed to be doing better.

Cabrera worries about the effects of the drugs in Penny's body.

One medication is known to stunt growth in children.

This is why the family is researching alternative treatments such as CBD oil, she said.

CBD treatment is a drug derived from cannabinoid chemicals in the marijuana plant.

The current medical marijuana law in Texas is nonfunctional because it requires a physician's prescription, which is illegal under federal law because CBD is classified as a Schedule I substance.

Even though medical marijuana is legal in 25 states, physicians won't prescribe it, fearing a loss of federal funding.

When Cabrera brought up whether CBD oil could be tried, the Houston medical staff treating Penny threatened to call child protective services.

"With CDKL5, nothing will ever cure it, but it could help with the seizures," she said.

There is anecdotal evidence and some pre-clinical research published; however, the federal classification of marijuana has created barriers for researchers to study its effectiveness.

Cabrera's mother, Tammy Campbell, used to be completely against medical marijuana.

But after learning that medical marijuana seems to be effective for some children suffering from seizures, she's changed her mind.

"I was on the side of 'No, they don't need that,'" Campbell said. "But after seeing what Penny goes through, seeing the hurt, just the fear in her eyes when she has seizures ... I said, 'Oh, maybe there are times when it's necessary.'"

The International Foundation for CDKL5 Research has not yet taken a stance on medical marijuana.

Karen Utley, treasurer and co-founder of the foundation, said the organization was started by a group of moms and was incorporated by 2009.

Utley's daughter, Samantha, had her first seizure at 10 weeks old but wasn't diagnosed until she was 20 months old.

She said getting a diagnosis changes everything and changes nothing.

"It gave us a community," she said. "It gave us an identity."

She said being part of the nonprofit gave her a sense of control in an out-of-control situation.

The Texan mom of three said one of the nonprofit's goals was to create CDKL5 centers to give families access to comprehensive care.

"One of the problems when you have something rare is you can't find any experts," she said.

There are three in the U.S., and one of them is at the Children's Hospital Colorado near Denver.

Cabrera said moving would give the family quicker access to physicians and hospitals familiar with CDKL5 and possibly CBD treatment.

According to the foundation, most with the disorder cannot walk, talk or feed themselves, and many are in wheelchairs and dependent on others for everything.

Many also have scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.

"I don't want her life to be constant doctor's appointments," Cabrera said.

She balances Penny's therapy with swimming and lots of family time.

"Even though it's going to be different, we're going to figure it out," she said. "I have faith in her. She's a strong baby."

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Features Editor

Laura has covered health and nonprofits in the Crossroads since 2014. She's also mom to a toddler, loves journalism conferences and is a big fan of sci-fi and crime TV.

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