5-year-old Rayaan fights through battle with brain, spinal cord inflammation

By Hina, mother of CHOC Children’s patient Rayaan

When Rayaan was 16 months old, he caught a simple cold. He had a typical low-grade fever and slept more than normal. I figured he needed the rest and would feel better the next day. The next morning, he was having a difficult time waking up so I thought I should take him to his pediatrician. She recognized something was very wrong and described him as being “unresponsive.” He was immediately transported to CHOC Children’s via ambulance. CHOC’s emergency department team was waiting for our ambulance and ready to care for Rayaan as soon as we arrived. They quickly assessed him and then placed him on a ventilator as he was brought up to the pediatric intensive care unit (PICU).

His care team ordered an MRI of his brain and diagnosed him with Acute Disseminated Encephalomyelitis, also known as ADEM. This means there was widespread inflammation in his brain and spinal cord that damages the myelin, which is a protective covering for nerve fibers. ADEM had affected over two thirds of his brain. We didn’t know it yet, but we would be at CHOC for the long haul.

Over the course of the next six weeks, Rayaan received multiple types of treatment for ADEM. His care team was vast, and included many different specialties: Dr. Nguyen Pham, a pediatric otolaryngologist (ear, nose and throat specialist or ENT), Dr. Gregory Wong, a pediatric gastroenterologist, Dr. Sharief Taraman, a pediatric neurologist, in addition to infectious disease specialists, in-patient physical and occupational therapists, a respiratory therapist, and the feeding team. He was in a coma and on life support for three weeks. During this time, his doctors kept a very close eye not only on him, but also on our entire family. Dr. Nick Anas, CHOC’s physician-in-chief; Dr. Jason Knight, medical director of emergency transport services; Dr. Paul Lubinsky, associate PICU director; and critical care specialists Dr. Juliette Hunt, Dr. Anthony Cherin and all of our nurses became family to us. I remember when Dr. Anas came to check up on Rayaan and he asked me when was the last time I layed next to Rayaan, I replied it’s been a while, and he ordered the PICU staff to transfer Rayaan from a crib to a full-size bed immediately, so I could lay next to my son. Rayaan was connected to every machine and monitor you can imagine, but his doctor was keeping my feelings in mind.

During this extremely difficult time when we were waiting for him to wake up, we were fortunate to have a wonderful support system. The Ronald McDonald Family Room let us escape for a few minutes, occaisionaly breakfast and lunch was provided by generous donors, and my daughter who was only three years old at the time was taken care of by child life specialists, while a social worker and case manager were assigned to us to provide us with counseling. This period was the hardest thing we had ever dealt with in our lives.

After three weeks of being in a coma, Rayaan began showing signs of waking up. He began by slightly moving his hands and arms. A few days later, we noticed his eye partially open. It would take him almost two weeks to be fully awake.  Although he had woken up from his coma, his journey was just beginning. The inflammation in his brain caused severe brain trauma and he lost his speech, and his ability to walk, eat, swallow and drink. While he was still in the hospital, a feeding tube was placed, as his oral muscles were to weak to swallow and chew. After his discharge, the rehabilitation team came in to ensure he would relearn the basics. Nicole Well, a speech language pathologist at CHOC, taught my son how to talk again. A feeding therapist named Polly provided electrical stimulation feeding therapy to make his muscles strong enough again to be able to eat, drink and swallow on his own.

Four years after his health scare, Rayaan is in Transitional Kindergarten and still undergoes multiple therapies in the effort to make a full recovery from his illness.

Rayaan endured several surgeries and procedures during his hospitalization, and even more after his discharge and as well as multiple visits to the emergency department at CHOC. The CHOC specialists always worked so hard on Rayaan as if he were their own child. I am very grateful to CHOC for saving his life and I know that the comprehensive care we received at CHOC we wouldn’t have been able to get anywhere else.

Today, four years later, Rayaan is in Transitional Kindergarten and still undergoes multiple therapies in the effort to make a full recovery from his illness. He remains under the care of CHOC specialists. I am inspired every day by his strength and his courage to overcome so much at such a young age. Above all, our family is grateful for CHOC, who has provided him with the comprehensive medical care throughout his journey.

Learn more about the pediatric intensive care unit at CHOC

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Innovation Comes Home

Five-year-old Emma has hypoplastic left heart syndrome (HLHS) and has undergone three open-heart surgeries since first coming to CHOC Children’s― the only Orange County hospital providing pediatric open-heart surgery― at just 2 days old. After the last surgery, she went home with an advanced, wireless monitoring device provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP). This lightweight tablet monitors Emma’s blood pressure and other vital signs, instantly transmitting the data to her care team at CHOC who can incorporate it into her electronic medical record as needed. The tablet also offers her parents extra peace of mind and direct access to Emma’s team of specialists at CHOC.

Emma and her family have participated in CHOC Walk in the Park to give back to the hospital that has cared for her since birth.

Videoconferencing for “virtual visits” mean CHOC doctors, nurses and other members of her care team are always close by. It’s part of a larger pilot program that integrates several emerging health technologies to provide even more highly personalized care.

HLHS is a type of heart defect that occurs when the left side of the heart does not form properly during pregnancy. In patients with hypoplastic left heart syndrome, most of the structures on the left side of the heart are small and underdeveloped. The degree of underdevelopment differs from child to child. Perhaps the most critical defect in HLHS is the small, underdeveloped left ventricle. This chamber is normally very strong and muscular so it can pump blood to the body. When the chamber is small and poorly developed, it will not function effectively and can’t provide enough blood flow to meet the body’s needs. For this reason, an infant with HLHS will not live long without surgical intervention.

Mid-way through taking a walk in the CVICU, Emma takes a break to dance with surprise visitor Mickey Mouse.

Babies born with this condition must begin the first of three open-heart surgical procedures within days of birth. Emma underwent her first surgery when she was 6 days old and had her third surgery almost four years later. After each surgery, her parents Patrice and Kevin saw noticeable improvement in her energy, mobility and quality of life.

During one stay in CHOC’s cardiovascular intensive care unit (CVICU), Emma and her family dressed up as superheroes and paraded throughout the unit.

But children like Emma need frequent office visits to monitor heart function, medication and symptoms. Over the past five years, her parents have made countless trips to CHOC, sometimes as often as every day. At home, they’ve meticulously tracked their daughter’s medications, blood pressure and overall health with pen and paper.

That changed last year thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure. Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit. With the Integrated Medical Tablet provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP), Emma’s doctors, nurses and care team are only a touch screen away.

home monitoring for choc childrens patient
Thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure, Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit.

“After her last open-heart surgery, Emma was still healing at home when we began testing out this machine,” Patrice said. “It gave us such peace of mind as we were still closely looking at her oxygen saturation and blood pressure. We didn’t have to go into the office every day to get this information—it could be recorded and sent to her specialists from the comfort of our own home.”

Instant Communication 

Surgery may be behind her, but Emma continues taking medications that require constant monitoring and adjustment. The tablet has built-in alerts to notify her doctor if the results are outside the range of the personal limits that have been set for her.

And if something doesn’t look quite right, Patrice and Kevin don’t have to drive Emma over to CHOC. They can take photos and videos with the tablet and send them directly to Emma’s care team.

Although Emma and her family love visiting with her care team, they are happy this at-home monitoring has resulted in less frequent trips to CHOC.

“Emma is on a diuretic for her heart condition, so being able to show her doctors if she is swollen or puffy is helpful,” Patrice said. “We are also able to type up our notes and questions for her doctors.”

Videoconferencing capabilities allow “virtual visits,” including wellness checks and parent education, at any time with the CHOC cardiopulmonary team. Beginning in 2018, CHiP will expand services to patients with other types of heart conditions.

“Patients and families feel much more comfortable outside of the clinical setting, but when they’re not in the hospital, they feel very nervous about the health of their child. They have much more peace of mind knowing that their child has quick access to CHOC from home,” explains Dr. Anthony Chang, CHOC’s Chief Intelligence and Innovation Officer, “We’re proud to offer a clinical environment to test and evaluate new technologies such as artificial intelligence and remote monitoring solutions.”

Dr. Anthony Chang, Emma’s pediatric cardiologist, and CHOC’s chief intelligence and innovation officer

Far More Than a “Fancy Gadget”

Remote monitoring, video conferencing and wireless access to a patient’s electronic medical record are exciting advancements in care for children with heart failure. In this pilot study, however, CHOC is exploring the additional benefits that may come from leveraging these capabilities with other emerging health technology.

One of those technologies is precision medicine, a treatment approach that incorporates the patient’s genetics, environment and lifestyle. Another is pharmacogenomics, which evaluates how genetics may impact a patient’s individual response to a particular medication.

As a pediatric cardiologist within the CHOC Children’s Heart Institute, Dr. Chang is interested in how these technologies, combined with data analytics and artificial intelligence, may further personalize treatment and improve outcomes.

“Our goal is to use all available technologies and provide the most advanced, innovative care that is best suited for the individual patient,” Dr. Chang said. “CHOC is taking a national role among children’s hospitals to develop a model that may ultimately be used by other pediatric specialties for better management of complex patients.”

Learn more about the Heart Institute at CHOC Children's

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CHOC Patient Celebrates Milestone Birthday with Blood Drive

Turning 13 is a big milestone for kids; one often marked by a memorable celebration, rather than a call for increased blood donations. But 12-year-old Austin Le Monte has very different plans for his upcoming birthday. Instead of a party and presents, he’s asking friends and family to donate blood to CHOC Children’s.

Seen by numerous specialists at CHOC, including a pulmonologist, allergist, gastroenterologist, hematologist and cardiologist, Austin has benefitted directly from the hospital. When he comes to CHOC for his monthly infusions, he sees other children, like him, who depend on the generous support of blood donors.

The first Austin Le Monte Blood Drive took place last year, attracting 28 donors over six days. This year, he has worked with CHOC’s Blood and Donor Services to extend the drive, which launches February 1 and will conclude on March 30, his birthday.

“We added more time to allow even more people to make plans to donate,” explains Austin. “I’d like to get at least double the number of donors we had last year.”

He has secured the support of his care teams, who participated in his blood drive last year and plan to do so again.

Dr. Anthony McCanta, his cardiologist, says, “Austin is a great young man, whose life is integrally connected to CHOC, doing a selfless act to help other patients. I am definitely donating again in his blood drive and encouraging my colleagues to do the same.”

Austin’s mom, Heather, shares Dr. McCanta’s admiration. “Austin has been through a lot and his experiences have only increased his feelings of empathy towards others. He’s kind, caring and compassionate, and really just wants to help other kids.”

In addition to organizing his blood drive, Austin stays busy with his honor classes and soccer team. He admits his focus over the next couple of months will be the blood drive; he’ll likely call daily to check in on the number of donors.

“Donating blood saves lives. When you donate to CHOC, you are supporting a great place and kids who really need the blood,” says Austin. And for people who may get scared or anxious by the thought of donating their blood, he encourages them to consider the courage of CHOC patients. “Just think about what they are going through. They stay brave, and so should you.”

To participate in Austin’s blood drive, February 1 – March 30, call 714-509-8339 to make an appointment or email donatebloodforkids@choc.org. Please note CHOC’s Blood and Donor Services is open 7:30 a.m. – 5:30 p.m., Monday – Friday.

Learn more about donating blood at CHOC

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How One Stranger’s Gesture Impacted the Lives of CHOC Families

They didn’t know each other. Their only connection was their teenaged children; one fighting a devastating cancer diagnosis.

Then came a letter. And food prepared with love. It was a kind, selfless gesture that inspired a special friendship and, in less than two years, more than 1,600 meals delivered to families at CHOC Children’s Hospital.


Jody Masquefa became – in her own words – obsessed with thoughts of and concerns for 19-year-old Dillan Morris. A friend of her daughter, Dillan had been diagnosed with cancer. She had never met Dillan’s family, but found herself thinking of them often, especially his mom Pam. She wanted to help them in some way, but didn’t want to intrude.

Dillan on the beach before his cancer diagnosis.

Finally, she got the courage to send Pam a letter. “You don’t know who I am, but my daughter is your son’s friend,” she wrote. Jody included her phone number and encouraged Pam to call if the family needed anything. A week later, she received a text message. Brief text exchanges continued until the family accepted Jody’s offer to deliver a meal to them at CHOC.

“I still remember the moment I pulled into the hospital’s five-story parking structure. It hit me how full it was…how many other families had children who were ill or injured,” recalls Jody. That meal led to her first face-to-face encounter with Pam. Additional food deliveries followed. Even though she become more acquainted with the Morris family, Jody knew she was still very much a stranger in their personal journey.


Sept. 21, 2015. The day the Morris family was forever changed. Their beloved son and brother Dillan, who they thought was suffering from a bad cold, was diagnosed with acute myeloid leukemia and acute lymphocytic leukemia. Just five percent of the population get both forms of the cancer. He was immediately admitted to the Hyundai Cancer Institute at CHOC for aggressive treatment.

Dillan’s mom Pam took a leave from work to stay by his side…each of the 105 days he remained in the hospital. She was there for the chemotherapy, the physical therapy sessions and procedures. There when they received news that his cancer wasn’t responding well to treatment. And there to watch her handsome and athletic son endure everything with strength and courage.

“He never complained. Never asked ‘why me.’ He had a great attitude through it all,” remembers Pam.

Naturally, her focus remained on Dillan. She couldn’t even turn her attention away to respond to a message from the mother of one of his friends. Her sister replied to the stranger on her behalf, sent updates and finally accepted an offer of dinner.

Pam met Jody for the first time in CHOC’s fifth floor family room, where Jody had dinner set up for the family. They talked for a long time. Texts and notes of encouragement followed, as did more meals.


Dillan came home from the hospital on Jan. 5, 2016. Ten days later he died. Jody attended his memorial service and was touched to see a full church, including staff from CHOC. Clearly the young man left a lasting impact on so many.

Once again, Jody summoned her courage; this time to approach Kara Noskoff, one of the hospital’s child life specialists who spoke at the service. She had an idea, a way to pay tribute to Dillan and help other families. “Could I bring meals to families at CHOC?” she asked. Kara agreed to help coordinate the effort, knowing how many families could benefit from such a kind gesture. Jody had one more person to ask: Pam. She wanted to know just how involved Dillan’s mom would like to be.


The first “Love Letters Food Box” was delivered to a family at CHOC on Feb. 2, 2016. The box, nondescript with exception of a small logo designed by Dillan’s friend, held a three-course meal, including beverages. It also contained a letter, unsigned. “This meal is a gift to you to let you know that some stranger out there knows you are here,” it starts. The letter continued with the story of the Morris’ encounter with a stranger, who was deeply impacted by their journey and by the realization that so many families at CHOC were on similar journeys. And that “a meal is often a way to show others that we care.”

Each Love Letters food box, nondescript with exception of this small logo designed by Dillan’s friend, holds a three-course meal, including beverages.

Since then, Jody and her volunteers, including Pam, have delivered more than 1,600 meals to CHOC. What began as a commitment to deliver one meal a week has grown to deliveries six days of the week. Pam’s delivery includes blankets, something her son treasured receiving from his friends.

“Jody and Pam are two amazing, caring and selfless women,” says Kara. “They are respectful of our families’ privacy, and wish to know only how many people to feed and any dietary restrictions. They are quiet heroes.”

Jody, Bob, Pam and Yves at CHOC Walk in the Park.

Jody and Pam’s support of CHOC includes participation in the 2016 and 2017 CHOC Walk in the Park. Their team, including their husbands Yves and Bob, most recently raised $14,000. During the walk, a mom recognized the Love Letters Food Box logo and raced to the group to express her appreciation for being a recipient of one of their deliveries. More families have approached Love Letters Food Box volunteers at the hospital, tearfully giving thanks for the generous and selfless gesture. One family was inspired to start delivering meals to a local hospital in their community.

Jody and Pam are humbled by the gratitude and by the opportunity to be there for others. Once strangers, the two are now close friends, making a big difference in the lives of families one letter and one meal at a time.

Jody and her husband own Yves’ Restaurant and Wine Bar in Anaheim Hills. Jody would like to grow the Love Letters Food Box program. Anyone interested in getting involved can email lovelettersfoodbox@gmail.com.

Discover other ways to support CHOC

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CHOC at Forefront of Treating Rare Genetic Condition

Just two weeks after losing their 6-year-old son to a rare and fatal genetic brain condition, Bekah and Danny Bowman began the first of many cross-country trips with their 3-year-old son in hopes that a new treatment would spare the younger boy from the same fate as his brother.

Ely was diagnosed with CLN2 disease, also known as late infantile Batten disease, shortly after his older brother, Titus, was found to have the same condition following nearly two years of symptoms. Batten disease typically begins with language delays and seizures before age 3, and rapidly progresses to dementia, blindness, loss of the ability to walk and talk, and death in childhood.

Beginning to show a speech delay, Ely would travel with his parents from Orange County to Columbus, Ohio, every 10 days to participate in a clinical trial wherein he would receive an infusion of a medicine that researchers believed would slow the disease’s progression.

But now, the Bowmans need only to drive a few miles to CHOC Children’s Hospital for this critical treatment. CHOC has become one of the first hospitals in the United States to offer Brineura, which the U.S. Food and Drug Administration approved in April as the first and only treatment for Batten disease.

Ely at CHOC for Batten disease treatment.

Over a three-year period, patients like Ely who were treated during the clinical trials showed no progression of the disease, which was radically different from the disorder’s natural course. The medication improves quality of life and buys patients critical time as researchers continue to search for a cure.

CHOC has been fast tracked to provide this novel new therapy commercially, which requires making a reservoir in the brain to give an infusion every two weeks.

Brineura’s availability at CHOC is also a game changer for Maya James.

Diagnosed with an atypical form of Batten disease about four years ago, the 14-year-old had also been traveling regularly to Ohio to participate in the clinical trial.

While the medicine has been shown to slow the progression of Batten’s devastating consequences, Suzette, Maya’s mother, says the treatments have helped her daughter improve her balance and walking. Maya continues to ride a bicycle and rock climb.

The treatment has given the James family hope.

“We’re so thankful to have this opportunity,” Suzette says. “Before, we had nothing. We only had, ‘Your child is going to die and we can’t tell you when. And she’s going to lose every function she has and we can’t tell you when.’ It’s truly groundbreaking what CHOC is bringing for patients with neurological conditions. This is an opportunity for people with other similar diseases to have hope.”

Maggie Morales was preparing to bring her daughter Mia to Ohio for treatment when she got a call from CHOC about Brineura’s availability.

Now, Mia, 5, has completed more than six infusions of the medicine, and her family has found a sliver of light following a devastating diagnosis last year.

Mia receiving treatment for Batten disease at CHOC.

“It’s amazing that there’s treatment because when we first got the diagnosis, there was nothing to do but take your child home and wait for it to happen,” Maggie says. “Hopefully along the way, a cure comes along. “

Bringing Brineura to CHOC is the product of three years of work by Dr. Raymond Wang, a metabolic specialist who treats Ely, Maya and Mia.

Dr. Wang works closely with neurosurgeon Dr. Joffre Olaya to administer the medicine. Each patient has an Ommaya reservoir implanted under their scalp, which allows the medicine to be infused directly into their brains.

In a sterile procedure every 14 days, Dr. Olaya and a team of highly trained nurses insert a needle into the reservoir to administer the medication. The infusion lasts four hours, and after four hours of observation, the patients can go home.

“This is huge,” Dr. Wang says. “You’re taking a progressive and fatal disease and stopping it. Having seen how heartbreaking it is for families to see the child they know get slowly robbed from them, the fact that we can offer these families hope, is tremendous. Something like this is the very reason I went into medicine and specialized in metabolic disorders: to provide hope to families affected by rare disorders such as late infantile Batten disease.”

As he receives his infusion, Ely wears medical scrubs with “Dr. Ely” embroidered across the chest and watches videos on an iPad. Flashing across the tablet’s screen are home movies of Ely as a toddler playing with his late older brother.

The Bowman family will never get back those days, but this life-saving treatment at CHOC is an opportunity to halt a disease that has ravaged their family.

“For Ely to be home and have consistency and we can still have some fun is wonderful,” Bekah says. “We can see him thriving.”

Learn more about metabolic disorders treatment at CHOC

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