From Brain Surgery to the Spotlight: How this Teen Ballerina Learned to Dance Again
After surviving a stroke, Thalia Fuentes and her mother Reina were ready to get their groove back. But they didn't have to do it alone.
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Written by Annika Tourlas for LivAbility Now
Chin up, shoulders down, lines drawn and toes pointed inside her white laced-up sneakers. With a breath in and out, 17-year-old Thalia Fuentes takes one last glimpse into her mother’s brown eyes before sharing her story for the first time.
Thalia Fuentes's childhood was filled with auditions, strict ballet teachers and the conformity that a career in ballet demands. A family history of flexibility and grace led her toward dreams of performing. A dream of pink pointe shoes and center stage. Thalia's dreams weren’t far from her reach as she trained at Houston Ballet, a selective professional ballet company.
In 2020, Thalia was offered a position for the Royal Ballet School in London, England – the monarchy’s ballet. Soon after, the world came to a halt. Dancers abandoned tondues and arabesques as the pandemic forced them off stage.
Having missed out on the chance to earn one of the highest honors for a young ballerina, Thalia felt betrayed by the world. “They had canceled the summer intensive,” Thalia Fuentes recalls. “I was very stressed and sad and wondered why this happened to me.”
Yet, for dancers, the pandemic offered an essential break. For the first time in years, their joints and minds could rest. Thalia eventually thrived in spending time with her siblings and cousins. Her vibrant and comical attitude made for the perfect pandemic prankster. She was a teenager again.
However, on May 11, 2020, at just 15 years old, the bubbly and sassy person disappeared behind the trauma of a moment that would change the trajectory of her life.
“It was totally out of the blue,” Thalia Fuentes says while glancing down at the notes she wrote to help jog her memory. “Something that I never expected to happen.”
With the ears of a veteran mother, Reina Fuentes could hear her daughter’s laughter echoing off the walls of their home, giggling and smiling along with her sisters while making cinnamon rolls; Thalia was happier than ever.
“It was May 11, the day after Mother’s Day,” Reina Fuentes says. “It was a normal Phoenix day. Nothing different. But, the day before that on Mother’s Day she had said to us ‘My eyes are blurry,’ but she could still see. I guess that is when the leak started.”
“With the type of injury she had, she should have been unconscious and she wasn’t.”
Suddenly the laughter stopped. Thalia fell to the floor unconscious while on FaceTime with her cousins. Her sisters nudged her, believing it was another one of her comedy routines. Yet, as Thalia’s eyes stayed closed, and her body broke out into a seizure, they knew this wasn’t a case of Thalia’s typical quarantine shenanigans.
Thalia’s memory of this moment is filled with blurry flips in and out of consciousness. Her mother Reina Fuentes steps in to recap the day.
“My other daughter called the paramedics because I was holding her head, I saw right away she was having a seizure,” Reina Fuentes says. “She was fine in the ambulance. They said she was talking and making jokes with them. With the type of injury she had, she should have been unconscious and she wasn’t.”
Reina raced beside her daughter, her slippers slapping against the pavement, into Phoenix Children’s Hospital, the neon building some may only see on an errand run along I-51. The drum of her heart took over her sense of hearing.
A girl who could never stay still. A girl who dreamed about leaping throughout the air sits still inside a tight and sterile CT scan. From the imaging room, Reina was escorted toward a screen displaying the image of her daughter’s brain.
A finger points toward a spot on the screen. Thalia experienced a traumatic brain injury due to a subarachnoid hemorrhage, causing three seizures and a pediatric stroke. The recurrence of the seizures diagnosed Thalia Fuentes with epilepsy.
“Subarachnoid hemorrhage (SAH) is a type of stroke characterized by bleeding between the brain and the thin tissues that cover the brain, known as the subarachnoid space,” states Barrow Neurological Institute. “This space consists of cerebrospinal fluid (CSF) and major blood vessels. Without emergency medical treatment, subarachnoid hemorrhage can result in permanent brain damage or death.”
“From that point on, I was numb,” Reina Fuentes says while staring at Thalia, sitting bright eyed beside her.
Doctors at Barrow Neurological Institute and Phoenix Children’s Hospital had to take necessary measures to save Thalia’s life. According to professionals at Barrow, there are multiple different forms of treatment. Thalia experienced all of them: craniotomy, surgical placement of a shunt, medication and neuro-rehabilitation.
She was put into a two-week-long medical coma and surgery began. As her brain became exposed to the cold, sterile air that filled the operation room, the doctors noticed something peculiar.
“The doctor comes out, and I’ll tell you that man had so much confidence. He says, ‘she’s going to walk and talk again.’ He says, ‘she doesn’t have any gray matter,’” Reina Fuentes says with a sigh of relief.
When blood touches the surface of your brain, irreversible damage to the natural gray and white matter can occur, causing severe cognitive deficits.
“Most studies suggest that once brain cells are destroyed or damaged, for the most part, they do not regenerate,” states John Hopkins Medicine. “However, recovery after brain injury can take place, especially in younger people, as, in some cases, other areas of the brain make up for the injured tissue
Thalia’s brain was pink and alive like the ballet shoes she once pranced on stage in.
“It’s one of those things where there might not ever be an answer to it,” Reina Fuentes says.
Thalia underwent another surgery three days later to relieve her brain of pressure that could lead to an unresponsive state.
“I remember banging on my head because my head felt like something threw a brick at it,” Thalia Fuentes says. “It was painful.” Surgeons removed a piece of her temporal skull, causing slight changes in the shape of her head. Thalia was later given a prosthetic piece to replace what was removed.
Now it was time to recover.
After coming out of her medically-induced coma, Thalia Fuentes began a journey that would last months. The aneurysm affected the area of her brain which controlled social, emotional, communication, and executive functions.
Every morning, her memory would reset.
“Think of, in the beginning, just not being able to know what’s going on. She doesn’t have a sense of self or awareness. That’s where it affected that portion of her brain,” says Reina Fuentes.
They realized incorporating her long-term memories associated with dance could restore her delayed functions.
Thankfully, occupational, physical, and speech therapists from both Phoenix Children's Hospital and the Center for Transitional Neuro-Rehabilitation stepped in to help. Even when she couldn't remember names of the people standing before her, Thalia's therapists saw the sparkle behind her eyes.
Their approaches were as unique as her.
They realized incorporating her long-term memories associated with dance could restore her delayed functions. Therapists would stand up with their shoulders rolled down through their spine, taking a ballet class with Thalia’s verbal instructions.
“I wasn’t such a nice teacher by the way,” Thalia Fuentes says with a young, mischievous giggle. Her sense of self was returning and so was her smile. Thalia continued working on her ability to scan, walk, follow a routine and more.
She developed bonds at CTN that have stood the test of time.
“If she connected with someone on an emotional level…,” Reina Fuentes says.
Thalia bursts in to finish her mother’s sentence:, “it would be a core memory.”
With the tilt of her head and a comforting grin, Reina Fuentes congratulates her daughter for remembering, “oh, look at you.”
Therapists at Phoenix Children’s Hospital were confident in Thalia’s future. However, they knew she would need support during her transition into independent living.
Her recreational therapist told the mother-daughter duo about Ability360, a 501(c)(3) organization dedicated to guiding individuals with physical, mental, and sensory disabilities toward independence.
Thalia and her cheer coach at Ability360 matched each other's energy levels and became the perfect pair.
For Thalia, Ability360 showed her that her lively spirit doesn’t have to disappear. She trained with the nonprofit’s help for the Phoenix Children’s Hospital 5K walk. Unsure if it would cause too much stress on her body, Reina worried that it was too soon. However, with the perseverance that pushed her throughout the last year of pain and confusion, Thalia Fuentes completed the walk.
“One day she looked at their [Ability360] schedule and she saw cheer[leading] and that changed her world,” Reina Fuentes says. Thalia and her cheer coach at Ability360 matched each other's energy levels and became the perfect pair. Now, Thalia does Zumba, personal training, and recreational therapy under the guidance of people who understand what it's like to have your body and mind become your number one obstacle.
“Seeing people with disabilities really inspired us to go there and support anyone who has a disability to go there and respect them at the same time,” Thalia says.
However, they offer a variety of programs meant to support individuals through multiple aspects of their independent-living journey.
Ability360 offers assistance regarding employment, home modifications, self-advocacy and transition services like 360Youth, which prepares teenagers with disabilities for the workforce or reintegration programs that support individuals as they gain the confidence, knowledge and resources necessary to move out from a nursing home and move back into the community.
“I think what is so cool is that there are many different programs here, which is really odd. It's not a typical non-profit, but what it allows people to do is take a look at the services and programs and customize what fits for them,” says Vice President of Advocacy April Reed.
Every individual who walks through Ability360’s large glass doors on the second floor has a story to tell. A story, like Thalia’s. A story that encourages those with and without disabilities to strive for a life full of opportunity.
President of the Independent Living Consumer Advisory, Jacob Pruit, helps shape programs for the sole benefit of Thalia and other consumers. His knowledge and expertise comes from understanding exactly what it is like to utilize the services himself.
In 2003, Jacob Pruit walked into Ability360, which at the time was Arizona Bridge of Independent Living (ABIL), not knowing what the organization had to offer. Pruit's life was turned upside down just a year earlier after surviving a car wreck. Pruit broke his neck and back in three different places along his spine.
“It opened my eyes that things weren’t ending,” Pruit says. “I just had to find different ways of doing things.” And so, he did.
A former world champion in martial arts, Pruit went through a year-long period of grieving and questioning.
“I was a record book holder. I was a decent mechanic and roofer. Then, I went without being able to move at all,” Pruit says. “It was tremendously depressing, except I told everyone around me not to worry. I faked myself out for many years. I didn’t really deal with it right away.”
No one could give Jacob Pruit his former life back. But Leonard Smith, Pruit's Independent Living Advocate, showed him how to reimagine the life he once lived.
“It opened my eyes that things weren’t ending,” Pruit says. “I just had to find different ways of doing things.” And so, he did.
Pruit found ways to organize his thoughts and develop patience toward his future. Rehabilitation is a process that you can’t rush. Once you realize the value of time, the sky opens and the light shines down.
“It’s going to feel like a struggle every day, but nobody’s gonna be able to get through it by themselves,” Pruit says. “For me personally, I owe my change in mindset to programs like Ability360 because without them showing me everything that I can do, it would be a much darker world.”
For Thalia Fuentes, learning how to adjust to a disability after years of living without one is overwhelming. Acceptance of that disability comes with years of work and guidance. It’s a dance. You may need to turn the other way or flex your foot to get by but it’s a dance just as beautiful.
Like Pruit said, you’ll have to find different ways of doing things. Ability360 understands this challenge but believes that a disability doesn’t have to stop you from striving to live independently.
“I’d rather have the opportunity to fail than never have the chance to succeed,” says Vice President of Community Integration Darrel Christenson. “That’s independent living.”
Christenson came to Ability360 in August of 1998 after working in Minnesota at another center for independent living. Christenson was born with no right eye and arm. His lifelong experience with a disability granted him the credibility needed to work in an industry that fights for people like Thalia Fuentes and Jacob Pruit.
“I tell people that, you know, my credibility with consumers doesn’t come because I put on a suit and tie some days,” Christenson says. “My credibility doesn’t come because I have a master’s degree. My credibility with consumers comes from my life with a disability.”
With the same credibility that Christenson is proud of, he and his colleagues are able to advocate on local, state and national issues with confidence and dedication. Executives at Ability360 work with communities and state legislatures to create accessible jobs, transportation and housing.
“We need the general public to understand what’s happening. People with disabilities are on waitlists for housing,” says Christenson. “So, if you need a wheelchair-accessible home or apartment and you need that subsidized, you could be on a waitlist for three years or more.”
Accessible housing gives the over one million permanently disabled people in the valley the ability to find comfort in their homes. Without a ramp, getting to the door becomes one of their greatest challenges. Without grab bars, each shower is a risk.
Thalia Fuentes pushed through each day with the helping hand of her mother Reina Fuentes. For some, the support of a parent isn’t always in arms reach. Ability360 can act as that support person for those seeking services, whether they need help with housing resources, or a place to discover their unique talents.
Grants and donations help them provide support to everyone they can.
Nonetheless, living independently means being able to support yourself when need be. Ability360’s advocacy program teaches consumers how to use their voices to gain help along their journey.
Organizations like Ability360 use the Americans with Disabilities Act (ADA) of 1990 as their backbone.
“The ADA is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life,” reads the introduction to the Americans with Disabilities Act. “To enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services.”
Despite this legislation's monumental steps toward progress and inclusion, there is always room for improvement. Ability360 executives like April Reed constantly lobby with legislators to enhance government assistance programs for the sole benefit of their clientele.
“People who acquire a disability might feel at first that life is over,” Christenson says. “Well, it’s not over. It’s just changed. And so, you adapt to be successful no matter where you’re at or who you are.”
It’s a chance to take their life back into their own hands. It’s a chance to become a president of an independent living consumer advisory council, a cheerleader, a college student or an executive at a non-profit. Thalia Fuentes experienced the unimaginable and with her hand interlocked in her mother’s, she overcame something that most 15-year-olds can’t comprehend.
Thalia’s future is bright. Her dreams are as vivid as ever. A dream of college and a career in modeling. A dream of happiness. Together with help of her family, team of doctors, therapists and program leaders at Ability360, these dreams are within reach.
“She doesn’t have headaches. She doesn’t have any complications. She’s everything you want,” Reina Fuentes says. “I feel like she’s a miracle.”