Wired for hope

Every morning when she awakes, Sydney Amato begins her daily battle with her body.

If she’s lucky, the 16-year-old will have gotten a handful of hours of uninterrupted sleep – dreaming, perhaps, of doing what most healthy kids her age take for granted:

Hanging out with friends. Going to school. Learning to drive.

Because of a neurological condition called dystonia, Sydney, who is in excellent cognitive health but speaks and walks with some difficulty, suffers from involuntary and near-constant contraction of muscles in her neck, arms, legs and trunk.

Her mind is unable to control the painful jerking that makes most of her body twist and go rigid, her muscles moving out of normal sequence.

Born a right-hander, she can feed herself with some struggle using her left hand. She wants to dress and put on makeup herself, but those normally simple tasks become lengthy ordeals.

“My body fights me all the time,” says Sydney, trying to distract herself in her hospital bed one morning by watching an old episode of “Keeping Up with the Kardashians.” Listening to her favorite music – Ariana Grande, Lauren Daigle, Drake – can only temporarily transport Sydney away from her debilitating condition.

“She knows what she wants to do,” says her father, Louis. “But her body won’t let her.”

Specialists at CHOC Children’s are working hard to change that.

CHOC patient and her father
Sydney, pictured with her father.

A first for CHOC

Recently, a team led by Dr. Terence Sanger, a physician, engineer and computational neuroscientist who joined CHOC in January 2020 as its vice president of research and first chief scientific officer, and Dr. Joffre E. Olaya, CHOC’s functional restorative neurosurgeon, implanted several temporary electrodes into Sydney’s brain.

Dr. Terrence Sanger, chief scientist at CHOC Children's

The surgery marked the first time a patient with a movement disorder at CHOC underwent a procedure called deep brain stimulation (DBS).

Working in perfect harmony as a team, Dr. Sanger and Dr. Olaya oversaw the first portion of a three-stage surgery on Sydney. As the surgeon, Dr. Olaya placed the leads following advice from Dr. Sanger, the neurologist, on where they should go.

 In the procedure, millimeter-thick electrodes were precisely positioned into the basal ganglia region of Sydney’s brain – about 3 inches deep. The surgery involved the use of the ROSA robot, the same tool that has been used during brain surgery on epilepsy patients at CHOC since 2015.

Considered one of the most advanced robotized surgical assistants, ROSA — which stands for robotic operating surgical assistant — includes a computer system and a robotic arm. It’s a minimally invasive surgical tool that improves accuracy and significantly reduces both surgery and anesthesia time.

The ROSA robot helped with implanting and targeting the electrodes and a portable operating-room CT scanner confirmed their position.

Turning down the volume

 DBS is designed to ease Sydney’s condition by sending electrical currents to jam her malfunctioning brain signals.

Think of turning down the volume on your car radio.

“Nobody really understands the cause of dystonia,” Dr. Sanger explains, “but there’s probably too much electrical stimulation going on in the motor areas of the brain. We’re trying to calm down that extra noise.”

Although DBS dates to the 1960s, it wasn’t until the 1980s that the modern era of using it to treat adult patients with tremor and Parkinson’s disease began.

In 2000, Dr. Sanger, working with engineers, data scientists, neurosurgeons and others, began implanting electrodes in pediatric patients.

Instead of the established method of placing the leads at predetermined sites and hoping they worked, Sanger and his team, just as they did in Sydney’s case, placed temporary leads to best assess where they should go permanently based on patient response.

In 2016, Dr. Sanger began honing DBS to treat children with dystonia. Before the surgery on Sydney, Dr. Sanger had overseen DBS on 26 children using the same three-stage technique. He says 80% of those children have seen successful results.

Early signs

Sydney began showing symptoms of dystonia – tremors in her hands – when she was 5 ½ years old.

A year later, she was using a wheelchair. She had her first brain surgery at age 7.

Since then, “she’s been all over the U.S.” seeking the right treatment for her condition after several setbacks, her father says.

But her condition was not improving.

Early this year, a neurologist in Kansas City, Missouri, recommended that Sydney see Dr. Sanger.

“I asked him, ‘If Sydney was your kid, where would you go?’” Louis Amato recalls. “He said, ‘Hands down, Dr. Sanger.’”

The COVID-19 pandemic pushed Sydney’s surgery to mid-August.

Sydney already had two electrodes in her brain that were only partially working when she came to CHOC in early August for surgery.

After two extensive run-throughs with their team, Dr. Sanger and Dr. Olaya, in a six-hour procedure that at one point required nearly 20 people in the operating room, implanted more electrodes to give Sydney a total of nine.

Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC Children's
Dr. Joffre Olaya

After surgery, optimism

On Thursday, Aug. 20, six days after Sydney’s surgery, Dr. Sanger stopped by her room at CHOC Children’s Hospital. The room was decorated in purple, Sydney’s favorite color.

Dr. Sanger greeted her as CHOC staff members, joined by members of Sanger Lab, Dr. Sanger’s research laboratory that conducts research in pediatric movement disorders, prepared to have Sydney walk back and forth down a hallway while connected to electrical equipment programmed to record signals in her brain and muscles.

A thick coil of multicolored wires snaked from under a large white bandage covering Sydney’s head. Extending about 6 feet, the wires were plugged into specialized recording equipment controlled by Jennifer MacLean, a CHOC pediatric nurse practitioner whose job was to manipulate the strength of electrical charges affecting the four points of contact on each electrode.

The goal: determine which charges worked best and on which electrodes.

“It could have turned out that the DBS procedure made no difference,” Dr. Sanger says. “But we’ve seen a very good response in Sydney.”

For example, her once mostly useless right hand was working much better.

“It gives you goosebumps,” Louis Amato says.

After taking a bite of a veggie burger and sipping some water, Sydney started to walk.

Following her were seven CHOC and Sanger Lab specialists.

“Go nice and slowly,” Jennifer told Sydney. “You’re going too fast for us!”

Perhaps Sydney was anxious to get back to riding Tigger, a quarter horse, in her hometown of Carthage, Missouri. She has been riding him for six months.

CHOC patient horseback riding
Sydney is eager to get back to riding her favorite horse, Tigger.

“Her balance isn’t bad on the horse,” says Louis Amato.

Sydney also loves to tan by her pool and swim.

What she wants most, however, is to be freed from her body so she can return to school and do what most teens enjoy.

“It’s stressful,” says her mother, Angie. “She has a lot of friends her age, but she can’t do a lot of the things they do. She has her days when she can get really upset.”

Now, however, working with Dr. Sanger, Dr. Olaya and the entire team at CHOC, the Amatos are more optimistic than ever.

“We’re hopeful that this is going to be a big life-changer for her,” Angie Amato says. “That would be the best thing that could ever happen – better than winning the lottery.”

‘The A-Team’

After crunching numbers for a week to assess which of the nine electrodes proved to be the most effective based on how Sydney responded to varying degrees of electrical currents, Dr. Sanger and his team settled on four electrodes that were permanently used to treat her condition – three new ones, and one existing one.

The team performed this second surgery on Sydney in late August.

In the third and final surgery, successfully completed in early September, a rechargeable generator that powers the DBS leads was implanted in Sydney’s chest.

“As we get better and better at this and as the technology progresses, we’ll be able to do this on kids who are less sick than Sydney,” Dr. Sanger says.

Dr. Sanger and Dr. Olaya are poised to dramatically improve the lives of many more patients like Sydney at CHOC.

“I’m really excited that we will be doing more of these procedures to help pediatric patients with movement disorders and significantly improve their quality of life,” says Dr. Olaya. “I look forward to continuing to provide this type of personalized care.”

a CHOC patient poses with her mom
Sydney, pictured with her mother.

Angie and Louis Amato say Sydney has never gotten this much special attention during her 11-year-plus medical journey.

“Here at CHOC,” Louis Amato says, “we feel like we’re with the A-Team.”

Says Sydney: “I’ve never felt this much confidence and this good about treatment before.”

Learn more about deep brain stimulation at CHOC 

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My daughter’s journey from seizures to surgery

By Celeste P., mom of CHOC Children’s patient Camila

When my daughter Camila was going through epilepsy surgery, I read stories about other kids’ success, and gleaned hope from them. As much as I learned from her doctors and nurses, it was helpful to read a parent’s perspective. I now share our journey in the hopes that it will be a source of comfort to other parents.

A mother’s instinct

During my pregnancy, an ultrasound showed that my baby had heart abnormalities. Camila underwent an MRI after she was born, and the imaging confirmed she had tuberous sclerosis complex (TSC) — a disorder that causes growths in multiple organs including the brain, heart, kidney and lungs.

The growths in her brain associated with TSC often cause seizures. In the days after Camila was born, I noticed the right side of her body seemed to twitch, and my instincts told me she was having seizures. I mentioned it to her nurse, but she dismissed my worries.

We were sent home as if everything were normal, but my gut told me something was wrong. That’s when I called CHOC Children’s. Ahead of our appointment with a CHOC neurologist, I kept a journal to track Camila’s episodes, including what her body did and how often it happened.

The journey begins

We met Dr. Lily Tran, a pediatric neurologist with special training in epilepsy, when my daughter was a few months old. Over the next few years, we tried several different treatment options including the ketogenic diet, steroid treatment and countless medications.

Camila_monitoring
Camila undergoing monitoring

Most treatments would follow the same pattern — the seizures would stop for a couple months, but then they’d come back stronger than they were before. Any progress Camila made during those seizure-free months would disappear, and she’d regress even further.

My husband and I just wanted to do everything possible for our daughter to have the best outcome.

Before surgery

Over the next few years, our lives revolved around trying to find a treatment that would stabilize her seizures. As open and willing as we were to try new treatment, this disease was relentless. Just before Camila’s fourth birthday, her condition finally regressed to the worst point it had ever been.

She stopped eating, was having 15 to 20 seizures per day, and was constantly throwing up. We had to pull her out of school. We couldn’t leave the house because she could no longer hold her head up, and I was scared to put her in her car seat. I had to take a leave of absence  from my job because my daughter’s health was deteriorating so badly.

We weren’t living anymore; we were in survival mode.

I had been pushing for surgery for a couple years but had wanted to try every other treatment option before we got to that point. When Camila stopped eating, smiling and going to the restroom, I was done trying treatment.

Dr. Tran confirmed through a series of tests that Camila was a candidate for surgery.

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Dr. Lily Tran, a pediatric neurologist and epileptologist at CHOC Children’s

Guides on our journey

Before we met Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC, Dr. Tran said, “I’ve worked with a lot of neurosurgeons in my career, and Dr. Olaya is amazing. I wouldn’t put your daughter in his hands if I didn’t trust him.”

joffre-olaya-md
Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

We knew surgery was the right decision, and that we had a good team in place, but as a mom I was still worried.

Camila’s care team at CHOC walked us through the whole process from surgery to recovery. Since most of Camila’s seizures originated from the left side of her brain, the plan was to disconnect the right and left sides of her brain and remove a portion of her left temporal lobe. This essentially “quieted down” the left side of her brain.

Camila’s care team answered all our questions. Although their job was to care for my daughter, they did a good job caring for us as parents, too.

Any lingering worries I had subsided when I happened to meet the mom of another Dr. Olaya patient at a grocery store in the weeks before surgery. What started as a stranger complimenting my daughter’s blanket turned into sharing stories and experiences and ended with total peace of mind.

I needed another parent to tell me it was going to be OK. She told me not to be scared and reminded me that we were in good hands with Dr. Olaya. That woman also put me in touch with another mom whose child had undergone the same surgery Camila was scheduled for. Being able to connect with a parent who understood exactly what I was going for meant the world to me.

Recovering from epilepsy surgery

Camila’s surgery lasted more than six hours.

While she recovered in the hospital, Dr. Olaya visited her every single day to check on her. He had a wonderful bedside manner.

Deciding to put our daughter through brain surgery was the biggest decision my husband and I had ever made, and I don’t know if we would’ve been as comfortable with that decision without Dr. Tran and Dr. Olaya.

Camila spent a month at CHOC recovering from surgery, and then she moved to a rehabilitation facility. Extensive rehabilitation is needed to help the brain continue healing after surgery. While she was there, she developed hydrocephalus— fluid buildup within the brain. This prompted a trip back to CHOC for a surgery to drain the fluid, and a one-month hospital stay to recover from surgery.  We went back to CHOC for another surgery to drain that fluid and month-long recovery.

Life after epilepsy surgery

These days, Camila is doing amazing. Before surgery, I would have to look at old photos of my daughter to remember what her smile looked like. The first time I saw her smile after surgery, it made everything worth it.

Camila_birthday
Camila celebrating her 5th birthday

Although her seizures returned a few months after surgery, they were less frequent and less severe than before surgery. We didn’t want to put her through another surgery, but fortunately we’ve been able to keep seizures at bay through other treatments.

As the parent of a child with special needs, we had learned over the years to find our version of normal. We had gotten used to Camila’s feeding tube – a necessity because she was unable to eat by mouth due to her developmental delay caused by TSC, and her frequent seizures. We had normalized frequent trips to the doctor and kept a bag in the car for emergency hospital visits. That was all normal for us.

We never pictured being able to do things that typical families do all the time: going to the grocery store or the mall, being away from home for more than two hours, traveling, or sleeping well at night knowing your child is safe. Now, those are all realities for us.

Besides regular checkups, we haven’t had to go back to the hospital since we were discharged from surgery recovery.

Pre-surgery, Camila wasn’t able to go swimming because of her frequent seizures. Now, she loves going to the pool and playing with other kids.

We had never let ourselves dream of traveling with my daughter, but we recently took family trips to Disney World and Mexico.

Camila_swimming
Camila swimming on vacation

Camila is back in school, and recently won awards for being the most involved and most improved.

All we want is for my daughter to be happy; everything else is just the cherry on top.

My advice to other moms

To another parent reading this whose child has epilepsy, know that you are not alone.

Know that it’s OK not to have all the answers. You will want to be strong for your kids, but this is a scary time. It’s OK to feel scared and sad. It’s OK to have bad days. Allow yourself the space and time to feel upset or sad about your situation.

I’m eternally grateful for the epilepsy mom I met in the grocery store, and the parent she introduced me to as well. In addition to those sources of support, my daughter’s care team helped me get involved with a support group for epilepsy parents. We help one another navigate the medication and treatment process from a parent perspective – something that at times can feel overwhelming. I would encourage any parent who has a child with epilepsy to seek out a similar group.

You and I may be strangers, but we’re really not — we’re family.

Learn more about the CHOC Epilepsy Program

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Beating brain cancer and giving back: Brodie’s story

Brodie’s cancer survivor party was a chance to celebrate the completion of his cancer treatment by gathering his family and friends for an epic Nerf battle. Wanting to give back to other CHOC Children’s patients, the twelve-year-old boy turned his celebration into a fundraiser. Brodie used the proceeds to buy Legos, journals, games—all his favorite things while in treatment—to brighten the days of other children battling cancer.

brodie-shopping-for-donations
Brodie and his brother shopping for gifts to donate to CHOC patients.

“He wanted to buy more of the things that helped break up his time while he was at CHOC,” says mom Megan. “If you ask Brodie what he wants to be when he grows up, he says ‘I just want to make people happy.’”

Brodie’s journey to a diagnosis

Brodie’s path from initial symptoms to a diagnosis was long. While practicing karate at home, his dad Marcus noticed that his left side didn’t have any “oomph.” Over the next few days, he and Megan realized Brodie was losing coordination in his left hand and left foot.

The first few doctors who saw Brodie ruled out a tumor but couldn’t identify what was causing his loss of coordination. An MRI revealed something on Brodie’s basal ganglia—a collection of nerve cells deep within the brain that help control movement. They were eventually told that Brodie had likely suffered a stroke. Later, another specialist thought it might be iron accumulation on the brain.

“Something looked wrong, but nobody could tell us exactly what it was,” said Marcus.

The family spent 18 months crisscrossing the country, seeking out various pediatric specialists on their quest for answers.

During this time, Brodie had another issue—every five months or so, he would go blind in his left eye for a few days. There was no discernible reason for this loss of vision.

Their quest eventually led them to Dr. Raymond Wang, a pediatric metabolic disorder specialist at CHOC Children’s. He was able to rule out a genetic reason for Brodie’s symptoms, and encouraged the family to seek out the care of the CHOC neurology team. The next time Brodie lost vision in his eye, the family headed for the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. Brodie underwent another MRI, but this time from a different angle due to his eye condition.

They found a tumor.

Another starting line

“The news that Brodie had a brain tumor was not the finish line of the 18-month journey we had been on,” Marcus says. “That was actually the beginning of yet another journey, this one at CHOC.”  

The family was introduced to Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s.

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Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s

“Not only was she professional and a top-quality doctor, but she was also very warm and empathetic in that first meeting,” Marcus says. “She even gave my wife a hug, which made a lasting positive impression.”

Dr. Plant explained that Brodie needed to undergo a biopsy to determine whether the tumor was cancerous or not. Dr. Joffrey Olaya, a pediatric neurosurgeon at CHOC, performed the biopsy.

joffre-olaya-md
Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

“I was scared to death when he went in for the biopsy. But I knew we were in very good hands with Dr. Plant and Dr. Olaya,” Marcus says.

The biopsy confirmed the mass in Brodie’s brain was a cancerous tumor known as a germinoma. Germ cells are the reproductive cells in an unborn baby. Germ cells that grow in an unusual way can become a tumor. Often, those tumors form in the ovaries or testes. Sometimes during an embryo’s development, these cells can migrate to the brain and result in intracranial (within the skull) germ cell tumors.

A doctor unlike the rest

Throughout their lengthy journey to find a diagnosis, Megan and Marcus had met many different specialists. They consider Dr. Plant a guide on their son’s treatment journey.

“We were, and continue to be, super impressed with Dr. Plant because not all doctors are like her, and we’ve seen a lot of doctors,” Marcus says. “That doesn’t mean they’re not good, but they don’t all have the same bedside manner as she does.”

Throughout the course of Brodie’s treatment, Megan and Marcus had a lot of decisions to make. In those difficult moments, Dr. Plant was right beside them.

“She provided us with all the information we needed to make responsible decisions, but didn’t make decisions for us,” Marcus recalls. “She helped us make the ultimate decisions as his parents.”

Brodie’s treatment plan included six months of chemotherapy at CHOC, followed by seven weeks of proton radiation in San Diego.

Post-treatment, Brodie has returned to CHOC every few months for an MRI of his brain and a check-up with Dr. Olaya.

“We were so grateful to have Dr. Olaya in our corner because he’s always on the ball. He’s very sharp and conscientious, but also very caring,” Megan says. “It might tell you something that when Dr. Olaya comes in the room, Brodie jumps up and gives him a bear hug.”

Finding a familiar face at CHOC

While Brodie was admitted to CHOC Children’s Hospital for chemotherapy, he was visited by a child life specialist from The Cherese Mari Laulhere Child Life Department, a group who strives to normalize the hospital environment for children and their families.

Child life specialists can engage patients in medical play to help them understand procedures and make tests less scary, bring their favorite toys and movies to their rooms, and show them amenities around the hospital like Turtle Talk and Seacrest Studios.

Shayli, the first child life specialist to visit Brodie’s room, turned out to be an old family friend.

“She looked familiar, but as soon as she said her name, a lightbulb went off—we knew her!” Marcus said. “Megan and I have been friends with Shayli’s parents for years, and they’re great people. But we hadn’t seen Shayli since she was a baby—and now here she is, taking care of our son.”

Shayli knew that Brodie loved Star Wars, so whenever characters would make special visits to the hospital, she made sure they didn’t leave before making a special stop in Brodie’s room.

Although Brodie spent a lot of time in his room resting during chemotherapy treatments, he made many visits to the child life playroom as well.

“For a while, it felt like we lived at CHOC, and it was great to have the ability to take Brodie to the play room for air hockey, or watch a movie or play a video game,” Marcus recalls. “There’s nothing you wouldn’t do to take your child’s mind off chemotherapy treatment.”

Brodie today

Despite countless doctor’s appointments and treatments over the last few years, Brodie has no fear of hospitals.

“He’s never met a stranger. Everyone he meets becomes an instant friend,” Megan says. “Brodie gets so excited to see Dr. Plant and the rest of his team. If I tell him that he has an MRI coming up, he’ll say, ‘Sweet!’”

With cancer behind him, Brodie is feeling more like himself. He loves Lego sets, playing X-box with his younger brother Finn, and swimming.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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Restoring a Happy Childhood: Rylee’s Epilepsy Journey

A teacher years ago bestowed an apt nickname on Rylee Christe: Smiley Rylee.

“She’s a very social, happy child,” says her mom, Sara. “She got that name from her preschool teacher. It just stuck forever. She’s always smiling.”

But despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. And Sara wanted nothing more for her young daughter than to enjoy her childhood without this burden.

The problem

In 2013, a pediatrician diagnosed a 4-year-old Rylee with complex partial seizures. Suddenly, Rylee’s mouth would twitch and cause saliva to bubble. She’d be unresponsive to questions. While the family awaited an appointment with a specialist, the seizures quickly increased in frequency, sometimes up to 30 a day.

One day, Sara knew she couldn’t wait any longer and took Rylee to an emergency department. An electroencephalogram, or EEG, detected abnormal brain activity, confirming the pediatrician’s diagnosis of complex partial seizures. Imaging also revealed a lesion on Rylee’s brain.

An odyssey to stop the seizures began. Doctors ordered multiple tests and prescribed several types of medications. But the seizures continued. They moved to another hospital and found some temporary relief, but the seizures began again.

Finding a guide

The Christe family’s next stop was CHOC Children’s, where they saw Dr. Mary Zupanc, medical director of neurology at the CHOC Children’s Neuroscience Institute and director of CHOC’s Pediatric Comprehensive Epilepsy Program.

dr-mary-zupanc
Dr. Mary Zupanc, medical director of neurology at the CHOC Children’s Neuroscience Institute and director of CHOC’s Pediatric Comprehensive Epilepsy Program

Dr. Zupanc, who has worked with thousands of patients with epilepsy throughout her career, understood exactly how distressing an epilepsy diagnosis can be for families and how debilitating seizures can be.

“We had been through the woodwork trying to get to where we are now, to find the amazing doctor that we needed,” Sara says.

A plan at last

First, Dr. Zupanc ordered long-term video EEG monitoring of Rylee’s brain activity. Another round of imaging revealed another lesion, this time in the left frontal lobe.

Dr. Zupanc then worked to get Rylee’s seizures under control, trying two medications previous care teams hadn’t. After the seizures reduced to about one or two a night, the Christe family headed home.

Next, Dr. Zupanc set out to stop the seizures for good. It was clear though that Rylee would need more than medication. Dr. Zupanc raised the prospect of brain surgery.

“At first, I was hesitant to move forward because any mention of surgery for your child is terrifying,” Sara says. “But brain surgery? Come on.”

But Dr. Zupanc explained to the family that evidence shows more than 70 percent of patients with seizures may benefit from surgical intervention; that children respond and recover well from surgery because of the plasticity of their young brains; and that surgery should be considered sooner than later.

Taking action

The family agreed to explore the option, moving forward with subsequent testing, exams and lab work needed to determine if Rylee was indeed a surgical candidate. After reviewing the results, a team of CHOC specialists agreed that she would benefit from surgery.

rylee-epilepsy-surgery

Next for the Christes was a brain mapping session at CHOC Children’s Hospital. During the procedure, Dr. Joffre Olaya, a pediatric neurosurgeon who is specially trained in epilepsy surgery, opened Rylee’s skull and placed an electrical grid on her brain. Later, Dr. Zupanc would record Rylee’s seizures to pinpoint the seizure focus. She also stimulated the electrodes on the grid to determine the location of Rylee’s motor area and speech and language center in the brain.

Three hours of testing confirmed Dr. Zupanc’s suspicion that Rylee’s seizures were originating from the left frontal lobe. The physicians were confident if Dr. Olaya removed the lesion there, the seizures would stop.

The procedure wasn’t without risks though. Drs. Zupanc and Olaya cautioned Sara that the surgery could leave her daughter with some impairments like a facial droop, speech problems and even some paralysis.

Sara and Rylee weighed the risks with the benefits of a childhood without seizures and decided to move forward. Three days later, she underwent a successful surgery with no complications.

Back to being a kid

After four days of recovery at the hospital, Rylee and Sara headed home. The next week, Rylee returned to school on an adjusted schedule and was begging her mother to use her roller blades and ride her bicycle.

Now, about six months past her surgery, Rylee, 9, hasn’t had a single seizure. She remains on medication, but it’s likely her dosing may decrease after a few years.

Life for the Christes has changed dramatically.

“Quality of life has improved so much for the whole family,” Sara says. “I can sleep at night. It feels like I haven’t slept in five years.”

rylee-after-epilepsy-surgery

And Rylee, who will likely remain on medication for the rest of her life with close following by her physicians, is in fourth grade and back to enjoying her childhood.

“She loves to dance and sing, and she can remember the words to every song she sings,” Sara says. “She loves to swim and ride bikes, and her favorite thing in the world is mermaids.”

Learn more about the CHOC Epilepsy Program

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One Family’s Story of How CHOC Doctors Became Family

Even after six miscarriages, Gladys Salazar and Paul Gomez kept hoping and believing that they would be blessed with a baby. At long last, the dream came true—twice—with the births of Bethany and then Tiffany. “Two miracle babies,” says Gladys.

Bethany has been battling several rare metabolic and mitochondrial disorders since birth, and Gladys and Paul are grateful for the care she receives at CHOC Children’s. Tiffany was cared for at CHOC as well. Unfortunately, her life was cut short by brain cancer. Still, her parents are grateful for the doctors who extended Tiffany’s life and all of the compassionate people at CHOC who supported them through a painful experience.

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Tiffany was affectionately known as “Tiffers.”

Tiffany was initially treated at another hospital, but her tumor didn’t respond to treatment. When it appeared that Tiffany was out of options, Gladys and Paul decided to “focus on making memories with her.” Through the Make-A-Wish Foundation, the family enjoyed outings to Knott’s Berry Farm and Disneyland.

On one of those outings, Tiffany’s color changed, she couldn’t hold anything down and had trouble breathing. An ambulance was called, and when it arrived Gladys went with her instincts and instructed the driver to take them to CHOC. “We made up our minds to let God do what needs to be done,” says Gladys.

At CHOC, Tiffany was examined by pediatric neurosurgeon Dr. Joffre Olaya, who determined that the tumor was growing and causing pressure. He recommended surgery to debulk the tumor. “I was crying,” recalls Gladys, “because I didn’t think it was an option. He said there were risks but that it could be done. The other hospital told us it was out of the picture.”

The difficult operation took five and a half hours. “Dr. Olaya told me he really had to fight to keep my daughter alive,” says Gladys. “He did an amazing job.”

Tiffany spent about a month recuperating in the pediatric intensive care unit (PICU). She spent four days with heightened breathing. “One of the doctors watched her breathe and said she was a real fighter; strongest diaphragm he’d ever seen,” says Gladys.

Sadly, however, complications developed. “Tiffany was in pain, and couldn’t tell us,” Gladys says. “We met with the palliative care team and decided to take her home. We got to celebrate her third birthday with a fiesta. There were Mariachis and the whole thing. We told everyone, ‘Come celebrate the lives of our daughters.’ We also participated in the CHOC Walk in the Park to help CHOC Children’s. We are so thankful that we got to spend six more months with our little Tiffers. It was all thanks to Dr. Olaya, thanks to CHOC, and thanks to God who brought us here.”

Tiffany was admitted to CHOC one last time, where she passed away peacefully. “But it was hard. After six miscarriages, you think, now this, too?” says Gladys. “But Paul said, ‘God gave us our daughters; we can’t be disappointed.’”

“Tiffany was an angel; she brought joy to countless people. I’m so glad we got the opportunity to meet her. She changed me in many ways. Cancer makes you see things differently. Tiffany’s in good hands now; she’s not hurting anymore.”

Gladys thinks of the team at CHOC as family. “We’ve been to a few hospitals before and there’s no comparison to CHOC,” she says. “Just the love and compassion they show towards the

patients. The doctors, the nurses, the social workers, the chaplain…they all care for you so much. Even the people who do the cleaning, and security—everyone is so polite. There was one nurse who was a mom and grandma, and she was so comforting―she felt like a mother to me. For her, it isn’t just a job, she totally loves what she does. Another nurse, near the end, put a little beanie on Tiffany’s head to help keep her warm. I was so touched by her kindness. I am really grateful for coming here.”

The Gomez family continues to rely on CHOC—Bethany has been hospitalized twice since Tiffany passed away. “One doctor said to me, ‘I’m sorry to you have to go through this now,’” said Gladys. “It was so touching. They know us very well; not like a number, like family.”

gomez-family
Gladys, Bethany and Paul

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