|
Only have a minute? Listen instead |
On the sandy shores of South Padre Island, a pair of talented East Texan high school sweethearts have found a home abundant in hope, resilience, community and music, but life-altering health struggles have impacted their livelihoods.
However, hope is on the Laguna Madre horizon. A new robotic brain surgery could change everything, freeing them from the shackles epilepsy has chained on their daily lives.
The air is salty, the breeze is fresh, and the sunset casts a golden hour glow over the ocean side deck at Louie’s Backyard. Danielle and Robby White smile at each other from their respective bar stools after playfully bickering with each other for the amusement of the crowd — who feel more like a family than an audience.
Together, their voices rise over the lapping ocean tide, as they perform songs they’ve written throughout the years, inspired by their new-found home.
“It’s some ‘South Texas Magic’,” they sing, the crowd joining in, “Feeling good is automatic on the Island by Laguna Madre bay.”
However, the “feeling good” isn’t as automatic as it once was as Danielle struggles to manage recurring seizures that have left her hospitalized multiple times.
Their story starts long before the diagnosis.
Many years ago, before they were The Whites of Texas, Danielle and Robby were two small town teens chasing their dreams. They met at a singing competition in Sulphur Springs in 1993.
When they shyly sat next to each other, having seen one another around but never officially meeting until now, they had no idea their chance encounter would alter the course of their lives.
Danielle was nervous about the competition. Robby was nervous about the closeness of the radiant and talented Danielle, whom he admittedly admired from the R.V. commercials she starred in all over Grayson County.
“She won the competition, but I got her phone number,” Robby quipped.
The two ended up falling in love, getting hitched, welcoming two baby girls into the world, and fostering a life founded on a shared love for music.
In the middle of a global pandemic, the pair visited South Padre Island to meet up with an old friend, Mark Attwood, a fellow Island musician, and had a wonderful time. When they returned home, tragedy struck, and their lives were forever changed.
Their oldest daughter, Taylor, died. Struck with profound grief, the family sold their things and moved to the Island in pursuit of a little peace following such an epic loss.
“South Padre Island saved us,” Robby said of their home, where they found a way to make a living by performing for the tight-knit community. They say the goodness they’ve found there is immeasurable. And the inspiration is just as deep, moving them to write songs capturing their lives in the lower Rio Grande Valley, with titles like “Almost Mexico” and “Love Letters from Old Mexico.”
But the community has had the biggest impact on their lives, they say. Opportunities sprung from the sweet and kind connections formed by the Gulf Coast have taken them across the country singing their songs.
But amidst the crushing pain of losing her first-born daughter, something was happening to Danielle below the surface. She was so affected by the death, that doctors say it rewired her brain, and she began having terrifyingly random seizures.
“These episodes completely wipe her memory of the events,” said Robby, who has become a caretaker of sorts for Danielle. He’s the only one who can tell when she’s about to have a seizure, so he’s constantly on guard, and always by her side.
The first seizure happened a little over five years ago, with many following, unpredictably. At first, doctors couldn’t figure out what was wrong, sending the pair on an exhausting medical journey as they tried to get to the bottom of it.
Eventually, she was diagnosed with medicine-resistant frontal temporal epilepsy that affects both sides of her brain. It has changed their lives in many ways. She now struggles with memory and can no longer drive, and they have to be very mindful regarding seemingly endless variables, like lights in venues, and even down to how much sleep she gets.
“It’s something that always has to be on our minds,” Robby said. “It’s like there’s a monster around the corner waiting for you all the time.”
At times, it’s affected their performances. A few years ago, Danielle was hit with a particularly bad static episode while performing at the Upper Deck and she had to be transported from the venue to the hospital via ambulance.
Unfortunately, this life-threatening incident wasn’t an isolated occurrence. When they occur, the seizures happen back to back, leaving Danielle in a dangerous state of looping seizures and resulting in intubation.
For years, Danielle’s medical struggles felt unbearably helpless, but that changed early this year, when they met a neurologist from Edinburg, who says he can fix her ailment with a robotic surgery.
The procedure, responsive neurostimulation (RNS) surgery, will place electrodes in her brain that will monitor and measure seizure activity and will learn how to stop them before they start. Robby compares it to “a pacemaker for the brain.”
After grueling trials to be cleared for the procedure, in which doctors would induce seizure after seizure while mapping her brain, Danielle was confirmed as a viable candidate for the surgery, scheduled for Aug. 18. The two are excited and hopeful for a life where they won’t have to worry as much.
However, as Danielle recovers, they will have to take some time off from performing, which is how they make their livelihood. They hope to resume in November.
Hearing this, a life-long friend and fellow song-writer in Dallas, Jeff Hopson, has put together a GoFundMe to help support the couple with medical bills and living expenses to lift some of the burden so the couple can focus on other things like getting Danielle well and back on stage.
“That just blew us away,” Robby said “It made us both cry.”
Danielle stresses that they never expected anything from anyone, and with her voice usually strong as Texas oak now quivering with gratitude, says she feels so loved, and far from alone.
As they wait patiently as possible for the day of the surgery to arrive, during the hardest times, Danielle says music makes things easier. Music is ubiquitous in their home. It’s like breathing, they say.
“It takes your mind off of it,” she said. “For those three hours when we are playing live shows, I don’t have to think about what’s happened, or what’s going to happen next.”