The highly anticipated Jane and John Justin Institute for Mind Health will open its doors at Cook Children’s this month. The Institute brings together nine specialties that treat disorders of the nervous system, allowing kids with neurological conditions to receive the holistic care they need under one roof.  

“The concept behind the institute is that these nine specialties share not only a lot of patients, but the same working system in the care that we provide,” says the head of the Justin Institute, Scott Perry, MD. “We want to improve the patient experience and outcome by making sure we're collaborating in the care of every patient, every day, at all times.” 

The Neuro Art Collection

To prepare for the arrival of patients and their families, Dr. Perry curated a collection of awe-inspiring artwork that combines creativity with elements of neuroscience. 

“I love art very much, and it’s a great way to connect with kids,” he said.

Every artist involved in the neuro art collection has some connection to neuroscience — some are PhD neuroscientists themselves and others have disorders of the nervous system. 

“A lot of people think neuroscience and the brain are super complex,” Dr. Perry said. “We hope this art draws people in to learn a little bit more about it.” Each artwork will have a corresponding QR code that links to information about the artist, how the piece was made, and how it’s connected to neuroscience.

Featured Artists and Artworks

The very first piece in the neuro art collection was created by embroidery artist, Laura Bundeson. Dr. Perry asked her to make a custom piece out of Epilepsy Awareness T-shirts he had designed over the years, and she stitched them together into the shape of a brain. Dr. Perry also worked with Bundeson to create a custom brain pin for all Justin Institute employees to wear.  

Michele Banks, a Washington D.C.-based artist, painted watercolor brains for the collection. She infused each work with calming, nature-related designs, including rivers, trees, fields, and oceans.   

Glass artist and retired oncologist, Reneé Tegeler, created four vibrant fused glass brains. Each piece represents one of the institute’s main groups—neuroscience, child study, psychology, and psychiatry.  

Developmental neurobiologist and woodworker, Louis-Jan Pilaz, contributed several wooden animals made up of different types of brain cells.  

“We presented him with the idea of making animals out of neurons to relate to the kids we take care of, and he took it and ran with it,” Dr. Perry said.

The Institute will also feature a nine-by-fifteen foot mural by blind painter, John Bramblitt. 

“I can’t wait to see the final product because I asked him to hide things in the picture for kids to find,” Dr. Perry said. The mural will also pay homage to the recently retired founding members of the Cook Children’s neurology and neurosurgery departments. 

A Comfortable Space for Patients and Families

“When we thought about creating this space, we thought about the kinds of children that are going to be seen here,” Dr. Perry said. “Kids with behavioral developmental disorders — things like autism — and we thought, what can we do to make it a comfortable environment for them without too much sensory overload?”

Every detail of the Justin Institute has been carefully chosen to create a stimulating, yet soothing space for kids with neurological conditions and their families. Whether it’s searching for a clue on a mural or trying to guess what kind of cells a wooden animal is made of, the Institute will offer limitless ways for patients to engage with art and science in new and exciting ways.

Related Articles: 

• It's a Colorful Life: Mural at Justin Institute Created by World-Renowned Painter who is Blind
• New Institute Connects the Dots Between 9 Medical Specialties Under One Roof

Sunday, March 26, 2023 is Epilepsy Awareness Day to spotlight this neurological condition that affects nearly 50 million people worldwide. People are encouraged to wear purple. 

By Ashley Antle

There was a time when constant seizures plagued 4-year-old Sofia Gutierrez-Lopez’s life. They started when she was 19 months old and gradually the seizures occurred hundreds of times within 24 hours. Day and night, Sofia’s brain misfired, stealing her ability to hit developmental milestones and live a normal life.

No amount or combination of seizure medication helped, which is common with Sofia’s type of epilepsy. Sofia has a severe malformation of the left side of her brain, and that’s where her seizures originated. Her parents were desperate for something — anything — that would free their daughter from the unrelenting seizures and allow her to have as normal a childhood as possible.

In April 2022, Sofia underwent surgery at Cook Children’s. Now a year later, her seizure activity is dramatically reduced and her quality of life dramatically improved. Since surgery, Sofia had one day where she experienced three seizures, compared to hundreds every day before surgery.

M. Scott Perry, M.D., an epileptologist and head of neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, was one of several doctors treating Sofia. He recommended a functional hemispherectomy — a surgery that removes or disconnects half of the brain to interrupt the seizures and stop their assault on the healthy side of the brain. In Sofia’s case, it would be the left side.

Like any surgery, it had its risks, but so did living with a brain under constant attack. Sofia already had developmental delays, and every seizure increased the potential for more. Eventually, the seizures could rob her of the ability to walk, talk and eat. Children with uncontrolled seizures also are at greater risk for sudden death during a seizure.

“In this case, the risk of surgery is weighed against the risk of her continuing to have seizures,” explained Daniel Hansen, M.D., a pediatric neurosurgeon specializing in epilepsy surgery and medical director of neuro-trauma at Cook Children’s Medical Center. “The reality is epilepsy surgery is really quite safe when done by a trained epilepsy surgeon or a pediatric neurosurgeon with epilepsy experience.

“The risk of catastrophic operative complications or unexpected postoperative complications is very low,” Hansen said. “Even knowing that there will likely be permanent changes to strength and vision on the opposite side of the body that are unavoidable, the trade-off to being seizure free is, for most children, completely worth it.”

Fateful Connection on Trip

Even so, having a portion of their child’s brain disconnected was a scary thought for Sofia’s parents.

“It's crazy to think that they could actually go in her brain, take part of her brain out and that is going to help her,” said Cristina Gutierrez-Lopez, Sofia’s mother. “It sounded like fiction.”

Sofia’s parents weren’t quite ready for that step until a trip to Mexico to visit family brought a turn of events that not only confirmed the surgery was necessary, but that Cook Children’s was the right place with the right doctors to have it done. While in Mexico, Sofia suffered a seizure emergency that sent her to the emergency department of a local hospital. A physician there seconded the diagnosis of Cook Children’s neurologists and explained that surgery was the only option for any relief.

Without knowing the family’s already established ties to Cook Children’s, the physician told them about a neurologist he knew in Texas to be one of the best in epilepsy treatment. He attended a presentation made by this Texas doctor at a medical conference. That Texas physician turned out to be Dr. Perry. The same Dr. Perry that Sofia had seen as a patient before her fateful trip to Mexico.

Sofia’s parents were stunned at the connection. Her mother said it was confirmation that God had orchestrated these events to bring them to a place of certainty and peace and that surgery was the right next step for Sofia.

When they returned to Fort Worth, the family met again with Dr. Perry and discussed the hemispherectomy. He introduced them to Dr. Hansen who would perform the procedure. Gutierrez-Lopez told the medical team they were ready.

“I am clear on all the risks,” she said. “I understand that this is the only thing that can possibly help my daughter.”

“When we went home from the hospital, I took home the same Sofia I brought to the hospital, but improved,” Gutierrez-Lopez said. “She had the same communication skills and the same physical ability. Everything was the same or better, plus no seizures.”

As complicated and risky as epilepsy surgery sounds, outcomes like Sofia’s are actually common.

“Sophia's case and her outcome is nothing short of astounding,” Dr. Hansen said. “I mean, we go from a girl who had literally hundreds of seizures a day to almost seizure-free. But although that outcome is amazing and astounding, it is the expected outcome. This is not a one-off sort of thing for children with epilepsy.”

Breaking Cultural Barriers

A perception that the brain is too complex to fix and, therefore, should not be touched is a common misconception, especially among minority groups, according to both Dr. Perry and Dr. Hansen. Dr. Perry is studying the disparities that exist within epilepsy treatment and, in particular, surgery. Many of those disparities are already well documented but a lot of cases use insurance databases to illustrate the fact that more white people have epilepsy surgery than non-white people, according to Dr. Perry. The problem with this approach, he says, is that it only looks at those who underwent surgery and not at those who were offered but declined.

“We say there's a disparity, which is true, but we don't know why there's a disparity,” Dr. Perry said. “Was it because they weren't offered the opportunity because maybe their insurance is not as good? Or their social situation isn't as good, or they were offered but declined for whatever reason?”

Dr. Perry’s study, which now has a database of more than 2,000 patients, examines the cases of those referred for epilepsy surgery and any differences between the work-up of each case. For example, do people of color have fewer medical tests and therefore are not revealed to be good candidates?

“It turns out that the work-ups are not really different based on race or ethnicity,” Dr. Perry said. “However, based on the data we’ve collected so far, people of color are almost four times more likely to decline the opportunity for surgery when offered.”

The question now becomes, why?  

“Insurance as a primary factor is not the whole story,” Dr. Perry said. “I think that's one limitation, but another limitation is there are cultural barriers to getting epilepsy surgery, and if we don't understand those barriers, then getting everybody the best insurance is not going to fix the problem. There's an aversion to this treatment approach and that's something we need to explore a little further because we need to learn what their concerns are so that we can address those barriers and make sure this opportunity is available to everybody.”

Tracy Vang, director of equity and inclusion at Cook Children’s, agrees. She cited the book “The Spirit Catches You and You Fall Down” by Anne Fadiman as an example of how cultural beliefs intersect with medicine when it comes to how some perceive illness, what causes it, and how it should be treated.

That’s why Gutierrez-Lopez shares her daughter’s story. 

She wants other parents, particularly those who share her Latino heritage, to know that while these are hard decisions to make, parents should consider the possibilities for their child over their own fear or perceptions of surgery.

“Fantasy” is the word she used to describe her initial impression of epilepsy surgery. After much of her own research, putting her faith in action, and trusting the capability of Sofia’s doctors, she pushed past her disbelief and fear. 

“As a mother, you never want to expose yourself to losing your children or anything bad happening to them, but when you have special needs children, the pain of seeing them suffer teaches you to be strong enough to take risks when you know there is hope for a better quality of life for them,” Lopez-Rosas said. “We trust in God Almighty and in the wisdom he has given to the doctors and put our little ones in their hands. They would never suggest surgery if they did not know that there is a great chance of success.”

What is photosensitivity?

Photosensitivity is a phenomenon that occurs in approximately 3% of people with epilepsy, so this risk impacts a small percentage of people with epilepsy overall. For those with photosensitivity, exposure to certain patterns and frequencies of flashing light over a period of time may induce a seizure. For many, the trigger can be very specific and vary from person to person – certain colors or wavelengths of light, particular frequencies (often between 5-30 flashes per second), and specific patterns could be triggers.

Movies with flashing lights aren’t the only potential photic triggers in our environment. Other potential examples include:

• Strobe lights used at dances or when part of fire alarms
• Sunlight flickering off water, shining through Venetian blinds or through roadside trees
• Lights hanging down through bridges or tunnels
• Television or computer screens with rolling images

How do you know if you are photosensitive?

The easiest way to know if you are at risk for photosensitivity is through electroencephalogram (EEG) results. Often, as part of the EEG exam, patients are exposed to strobe lights at various frequencies during the study. The neurologist reviews the EEG to see if there were changes to the brainwave pattern during the lights suggesting a higher risk of seizures. This is called a photoparoxysmal response (see the image to the right). If that pattern is present, sometimes the technicians will then repeat the test using colored filters over the strobe light to see if they can make the trigger disappear. If they can, some people can wear polarized colored glasses to filter out the triggering light and avoid the photic response.

Certain epilepsy syndromes are known to have a higher association with photosensitivity. These include the idiopathic generalized epilepsies and some named syndromes below.

• Dravet Syndrome
• Juvenile Myoclonic Epilepsy
• Jeavons Syndrome
• Sunflower Syndrome
• Unverricht-Lundborg Disease

What steps can you take to avoid photic-induced seizures?

Disney did not indicate which scenes in the film may contain potential photic triggers, so the viewer must remain aware of potential triggers. There are multiple easy steps people can take to avoid photic triggers and still enjoy the film and other environments where photic triggers may be present.

• Close one or both eyes and look away during scenes with sustained flashing lights.
• If you are playing a video game or watching TV/movie and you start to get jerks in your arms/legs, turn away from the screen immediately.
• Use computer screens with glare guards.
• Turn off the autoplay features on social media (videos can automatically play on social media platforms that have strobe effects and may trigger seizures) – not sure if we want to comment on the court case Monday of Kurt Eichenwald who -was the victim of a strobe attack.
• Turn down the brightness of TV/computer screens.

While photosensitivity can be a seizure trigger for some people with epilepsy, it should not be a deterrent from enjoying these activities. Being aware of the potential for photic triggers and taking steps to avoid sustained exposure can help prevent seizures while still enjoying the event.

So go forth, grab a popcorn, and enjoy the movie – and may the Force be with you!

Diego and Tatiana Alvarez did all those things to help their son Mirko in his battle against epilepsy in a wild adventure that began a year ago in Bolivia and brought them to Cook Children's Medical Center in Fort Worth, Texas.

Mirko, now 4 years old, has since returned with his family to Bolivia. He's walking and showing amazing progress. It's hard to believe that this little boy went through so much over the course of a year, taking his family with him through a remarkable adventure.

Down a dead-end street

Life in Bolivia is judged on a different scale than how we measure success in the United States. Minimum wage is around $280 a month. You make a decent living at about $800 and anything over $1,000 is considered great.

Diego and Tatiana lived a good life in Santa Cruz, Bolivia, raising their children - Andrey, 10, Mia, 8 and Mirko. Diego helped students learn English and competed in mixed martial arts. Tatiana drew amazing sketches and her art hung in the couple's home.

For three years, Mirko kept up with other children his own age when it came to speaking, running and playing.

Then on Feb. 12, 2016, Mirko ran a very low temperature, but nothing to get too concerned over ... at least not right away. After the fever continued for a couple of days, the family made a doctor's appointment.

The evening prior to the appointment, Diego was in the gym training for his next fight. He put his phone away, but as he was warming up he noticed it was blinking and he felt that something was going on before he picked up the phone. When he answered, he heard his mom hysterically screaming and shouting.

"Something has happened to Mirko," she said. "He's convulsing."

Diego grabbed his stuff and ran to his car. His wife called shortly after. "Mirko's dying," Tatiana cried.

Tatiana held Mirko and stepped outside their home screaming for help, Andrey ran to a neighbor's house to a neighbor, who rushed Tatiana, Mirko and his siblings to the hospital. Diego drove from training to the hospital to meet his family. The convulsions continued all over the little boy's body and his eyes rolled back in his head. The doctor on duty asked Diego to step outside.

"We are a small hospital. We can't take care of him," the doctor said. "You need to take him to a big hospital."

Then the doctor surprised Diego with a question. "Do you have a car?" The doctor explained the ambulance at the hospital wasn't dependable and a newer car would get Mirko to the hospital faster.

Diego, his sister, Mirko, with an IV in his arm, and the doctor piled into the sports car and took off like they were being chased in an action movie.

"Thank God I drove a fast car," Diego said.

The family raced through Bolivia, pounding the horn, screaming at people to get out of the way while running red lights. At one point, a traffic jam stopped the car and the doctor told Diego he had to find a way to get Mirko to the hospital because the little boy only had a few minutes left to live.

"It was terrifying," Diego said. "I was moving on instinct and desperation."

Diego remembered that another hospital was only three blocks away from where they were stopped. He hopped his car on the sidewalk, yelling at people to move. They made it to the bigger hospital's ER. The convulsions lasted for more than 40 minutes. But doctors were able get Mirko stabilized.

Treated Like a Refrigerator

Mirko always had been a daddy's boy. They share a special bond that began at birth. Diego stayed next to his sleeping son, scared of what would happen if he closed his eyes.

"I didn't even know what a seizure was until this happened to Mirko," Diego said.

Mirko woke up at the hospital and smiled at Diego like it was any other day and even asked, "Why are we here?" But any sign of relief vanished as Mirko's eyelids began to twitch again.

Mirko received thorough testing - an MRI and an EEG. The next day, Diego and Tatiana met with a neurologist at the hospital in Bolivia.

"She treated our son like a refrigerator. She was very cold," Diego said. "She said, 'Your son has epilepsy. Give him this medication. I'll see you in three months.' We had so many questions. 'What can he eat?' 'What can he drink?' 'What happens the next time he has a seizure?' 'Will he have a normal life?' 'But we never got the chance to ask anything."

White Spots on the Brain

The MRI scan of Mirko came back, showing "white spots on his brain." A neurologist told Diego that his son could have leukodystrophy, which shows up in the white matter of the brain on scans. Diego looked up the disorder online and his heart plummeted into his stomach. If he had leukodystrophy, Mirko possibly faced loss of motor function, muscle rigidity, the loss of sight and hearing and eventually death."

"I cried a lot," Diego remembers. "It's the worst you could hear about your son. He's going to die. I was never an alcoholic. I never did drugs. I didn't smoke. Neither did my wife. We lived such healthy lives. But we couldn't help but wonder if it was somehow our fault."

Fortunately, Mirko's parents wanted a second opinion. They found a neurologist who told them their son didn't have the fatal disorder. The white spots were likely a result of the MRI machine being so old at the previous hospital.

While that news was good, it only proved what Diego and Tatiana already knew. They weren't getting the best care possible. They would have to go elsewhere to find any hope for Mirko.

A Game of Chance

Their new neurologist told Diego and Tatiana their son wasn't going to die, but he needed surgery to control his epilepsy. Mirko needed surgery to remove the portion of the brain causing the seizures and he needed it fast.

Mirko's seizures came often - 20, 40, 60 seizures or more a day. He lost his quality of life and their happy little boy was losing himself to epilepsy.

"I was tortured," Tatiana said. "I would count the seizures every day. The amazing thing was after every seizure, Mirko would still smile. I read a Facebook post by a dad who said to count the smiles and not the seizures. That changed everything for me. I now saw more smiles than seizures."

Diego and Tatiana were desperate to find help for their son.

Diego's father, Javier, told his son they would find the best place in the world for their son. Somehow, they would find the money to make this miracle happen.

Mirko's parents searched online and researched to find the right hospital for their little boy. They found hospitals in Chile, Brazil, Miami, New York and Houston. They narrowed their focus to a children's hospital in Miami. The soonest they could see him was three months.

But as Diego frequently says, "God has his ways."

During the turmoil of trying to find a place to help his grandson, Javier went to play billiards with friends to distract him from the real world for a little while.

A friend could see something was bothering him and asked what was wrong. When Javier told the man Mirko's story, the friend told him about his niece's child who had a serious neurological disorder. He described to Javier about a place in Fort Worth, Texas called Cook Children's. After being seen at Cook Children's, the family had actually moved to Fort Worth to be near the doctors. That's how much the place had meant to them.

"He told my dad that lady had been all over the world. All the same places we'd been looking at too. But the woman said she couldn't find any treatment for her son until they came to Cook Children's," Diego said.

That evening, Javier talked to his friend's niece about Cook Children's. The following day Javier connected Diego with the woman and they spoke for more than two hours.

"She really convinced me," Diego said. "I felt it. I felt this was the place. We had to get to Fort Worth."

Diego called Cook Children's and was connected to Yadira Nunez, International Business Development liaison. He told her his story and that a neurologist at Cook Children's, had taken care of a family friend's son. Nunez was in Mexico for a conference with a neurologist and put Diego on the phone with the doctor.

Within a matter of hours, Diego and Tatiana booked an appointment that would have them arriving in Fort Worth in less than two weeks.

Sell Everything

With an appointment made, the Alvarez family now had to pay for their trip. Javier bought the plane tickets for Mirko and his parents. The need for money called for drastic steps. On Dec. 5, 2016, Diego spent his birthday selling nearly everything he owned to provide care for his son; and the rest of the family also sacrificed their belongings.

"Thank God Diego's father was there to help and made everything possible," Tatiana said. "Diego always says, 'My dad is our guardian angel.'"

Diego, Tatiana and Mirko arrived in Fort Worth on Dec. 6, 2016. They spent Tatiana's birthday, Mirko's birthday, Christmas and New Year's Day at Cook Children's - all away from their two other children.

Their older son and daughter were heavily impacted by Mirko's condition. Not only were they away from their parents for more than six months, but they had to withdraw from private school.

"Private schools are so important in Bolivia," Diego said. "Public schools there aren't good. You can't get the same education, plus they are insecure. There are kidnappings at the other schools."

Diego's mom went with her grandchildren to the school and stayed there until the end of the day so the kids wouldn't be left alone.

Dump Truck

At Cook Children's, the Comprehensive Epilepsy Team took over the day-to-day care of Mirko as he was admitted to the Epilepsy Monitoring Unit once he arrived. Within 11 hours, he experienced 40 seizures.

"We evaluated Mirko and struggled a bit with the actual reason for his epilepsy, but ultimately decided a large resection of his frontal lobe would be the best answer to help him without hurting him," said Scott Perry, M.D. medical director of Neurology. "We also knew this initial resection may not be adequate, but wanted to try to preserve as much of his brain as we could."

On Feb. 2, 2017, David Donahue, M.D., a neurosurgeon at Cook Children's, performed the surgery on Mirko to remove his left frontal lobe. While the Diego and Tatiana found previous doctors cold, they found themselves being listened to and informed at Cook Children's. Both Diego and Tatiana refer to Dr. Donahue as the "sweetest."

Following surgery, doctors prepared Diego and Tatiana for the possibility that their son may not speak because speech was in the area removed. But when he came out of anesthesia, Mirko looked at his parents and said two simple words typical of many little boys.

"Dump truck."

It's believed that the brain, being the amazing organ that it is, already was using the healthier parts on the opposite side to shift his speech. The other fear was that Mirko would be paralyzed on his right side. But soon after surgery, they noticed while sleeping Mirko moved his right arm and leg.

Diego and Tatiana hoped that the surgery would end Mirko's seizures. While they weren't every day, Mirko still had seizures, although not the severe ones that had been so devastating. The neurological team held out hope that the surgery would eventually end the seizures altogether.

And Diego and Tatiana waited for things to return to how they used to be.

You Can't Go Home ... Yet

Following the initial surgery, Diego, Tatiana and Mirko planned to go home to Bolivia. They had received help and Mirko's seizures weren't as severe and easier to control.

But that wasn't good enough for the Epilepsy Team.

The team knew that the same quality of health care wouldn't be waiting for Mirko in Bolivia and he wasn't responding well enough to medications to control his seizures. They felt it was it was in Mirko's best interest to have one more surgery.

"It was difficult to tell Mirko's family that another major surgery was needed. But we felt under the circumstances, a second surgery was required to establish a better quality of life for Mirko once he returned home," Dr. Perry said. "It was really his only hope at that point."

While the first surgery removed Mirko's left frontal lobe, a few weeks later the second surgery disconnected the entire left hemisphere from the right side of his brain.

After the surgery was performed Mirko developed a blood clot in his brain and the family stayed in Texas for two more months to treat it. Mirko required six blood thinner shots a day for those two months and took them "like a warrior he is." After the blood clot was gone, it was finally time to return home. Mirko and his parents arrived in Santa Cruz, Bolivia on May 26, 2017, just one day before Mother's Day. They celebrated the holiday and Mirko's health six months after their adventure began in Texas.

The surgery and treatment was a success. Mirko is now seizure-free. His mental faculties are intact and he is able to speak. Physical therapy helped Mirko regain the right side of his body and he is now able to walk.

"We used to have a normal life," Tatiana said. "We would go to the cinema. To the mall. We had a normal family. A year later, everything changed because of epilepsy. We have a normal life again now. We are just so thankful to God for Cook Children's and everything they have done for us. We really are."

After all, what's a great adventure without a happy ending.

Celebrating Cook Children's Centennial

Cook Children's is turning 100 and will be celebrating all year! Don't miss out on the fun throughout 2018. Enjoy unique stories, parades, special guests, and community events across Fort Worth. We hope that you can share in some our celebrations because you're the 1 in our 100!

Celebrate with us