As published in The Victoria Advocate
Dozens of toys litter the floor of three-year-old Penny Cabrera’s Goliad, Texas, bedroom. The toddler sits in the midst of the chaos wearing an Easter basket as a hat while her mother, Brittany Cabrera, 25, watches with a smile.
This is a typical afternoon for Cabrera, a stay at home mom, and her daughter, Penny, a preschooler with a rare genetic disorder, CDKL5. The neurodevelopmental disease affects Penny most notably in the form of uncontrollable seizures, impaired motor skills and inability to communicate verbally with the exception of three to four words.
Penny’s CDKL5 diagnosis came as a shock to her young, first-time parents back in 2016.
“The pregnancy was perfect, the delivery was fine. Two months later it was like all of a sudden our world completely turned,” Cabrera said.
Penny’s short life has been riddled with obstacles and countless medical diagnoses including West syndrome, strabismus, and Lennox-Gastaut Syndrome in addition to CDKL5.
“It’s a helpless type of thing because you can’t fix it. It’s the worst feeling because you don’t want your child to suffer or be in pain like that,” Cabrera said.
When Penny was first diagnosed with CDKL5 at two months old, the Cabreras visited hospitals across Texas seeking the best care for their daughter. They became aware of CBD oil as a treatment for seizure disorders and inquired about it to their providers at Texas Children's Hospital in Houston. Their inquiries were met with backlash from the staff who told them Child Protective Services would be called if they tried to obtain CBD oil for their daughter.
In the early days of Penny’s diagnosis, the Cabreras entertained the idea of moving to Colorado to seek medical marijuana and more comprehensive treatment options for Penny as a last result. That last result has now become their new reality as the Cabreras, Brittany, her husband Dustin, and Penny, have recently put their Goliad house on the market and begin hunting for a place to live in the Denver area. The Cabreras hope to make the move this summer once the school year ends. Cabrera’s parents and two cousins will be moving to Colorado alongside the family to offer assistance.
“We’re all relocating for this. It’s a lot, moving to a new place not knowing anyone, so my parents are going too and we’re all just going to help each other out over there,” Cabrera said.
Cabrera plans to get her Certified Nursing Assistant’s license to become Penny’s paid home health nurse in Colorado and her mother, Tammy Campbell, a local school teacher, plans to seeks employment as a teacher’s aid for Penny at her new school. Having Campbell closeby brings Cabrera a sense of comfort about sending her daughter into unfamiliar territory.
“Here, we know the teachers because it’s Goliad, we grew up with all these people and everyone is basically related to each other… When we move to Colorado we won’t know a soul there. It really terrifies me to send her in blind,” Cabrera said.
When Penny turned three in December 2018 her seizures became increasingly worse and more frequent, leading her parents to research additional treatment options. It was then that Cabrera launched the fundraiser, Penny’s Pal, to raise money for a seizure response dog for her daughter. The dog will be custom-trained through SDWR, Service Dogs by Warren Retrievers, to meet the needs of Penny and her family, providing assistance and companionship.
Since its inception, Cabrera has raised just over $6,200 for Penny’s Pal through her monthly fundraising efforts in the form of local bake sales, raffles, t-shirt sales and garage sales. She remains hopeful the $25,000 fundraiser goal will eventually be met.
In the meantime, Cabrera tries to provide a sense of normalcy for daughter and recently enrolled her in a special needs class at Goliad Elementary School.
“It’s good for her because now she gets to socialize and she loves to be around other children,” Cabrera said.
Penny attends school for 2 hours a day alongside other special needs students.
“The first week I did not know what to do with myself because I’m used to having her home. I was like Betty Crocker, baking up a storm, because I didn’t know what to do with my time,” Cabrera joked.
Cabrera expresses immense gratitude for Penny’s teachers and school and is amazed by what her daughter has learned in just a few short months of attendance. Cabrera has noticed improvement in Penny’s motor skills along with entirely new skills like knocking and opening a zipper.
In February, the Cabreras were granted a Make A Wish trip for Penny and embarked on a cross-country roadtrip for her to meet Moana face to face at Disney World in Florida. Cabrera cites Moana as the only thing she’s ever known for sure Penny likes because of her overjoyed reaction whenever the music or movie is on.
“She can’t tell us what she likes... so it’s a big deal in our house because it’s the only thing we know she’s truly interested in,” Cabrera said.
Despite the many hardships and challenges, Cabrera views Penny’s CDKL5 as a blessing in disguise.
“I feel like this brought us way closer together as a family,” Cabrera said. “We cherish things more. The little things are ginormous to us.”
For more information on fundraising and updates on Penny’s condition, follow along at Facebook.com/PennysPal.
Click here to donate directly to the Penny’s Pal fundraiser.