Batten disease patients highlight CHOC’s growing reputation as a destination for kids with rare conditions

In the yard of his home just outside Boise, Idaho, Ely Bowman loves to toss balls and play with Bobo, the family Goldendoodle. He also loves the trampoline.

“If you were to come over and just watch him,” says his mother, Bekah, “you would not believe me if I told you he was blind.”

Ely, who turns 8 in July, lost his sight when he was 6 due to the rare neurological disorder CLN2 disease, one of the most common forms of a group of inherited disorders known as Batten disease.

Kids with CLN2 disease are missing an enzyme that chews up waste products in the brain. This lack of a cellular “Pac Man” to gobble up the bad stuff eventually leads to the destruction of neurons, resulting in blindness, loss of ability to speak or move, dementia, and death – usually by the teens.

There is no cure for CLN2 disease. But thanks to genetic scientists, neurosurgeons and nurses at CHOC, there is hope for delaying progression of the disease – one that claimed the life of Ely’s older brother, Titus, at age 6 in September 2016 before a cutting-edge therapy became available at CHOC six months later.

The therapy, Brineura, is a medication that treats the brain via a port under the scalp with a synthetic form of the missing enzyme. CLN2 patients come to CHOC every two weeks for the four-hour infusion to keep the drug working effectively.

Ely receiving an infusion at CHOC
Ely receiving an infusion at CHOC

Largest infusion center in country

CHOC since has grown into the largest Brineura infusion center in the country and the second largest in the world. Kids from all over the United States have come to CHOC for Brineura treatment since it first was offered in March 2017 following a three-year effort by Dr. Raymond Wang to get the green light for CHOC to become the second infusion site in the U.S.

“When a family has a child with a rare disease,” Dr. Wang says, “and if the South Pole were the only place that was offering treatment, the family would find a way to get there. Those are the lengths that a rare disease family would go to help their child.”

CHOC now has treated 13 Brineura patients, the latest being 3-year-old Max Burnham, whose parents having been making the trek to Orange every two weeks from their home in the Bay Area since Max’s first infusion on Feb. 8, 2021.

Max asleep with Choco teddy bear
Three-year-old Max and his family travel to CHOC from Northern California every two weeks for treatment for Batten Disease.

CHOC’s Brineura program underscores its growing reputation as a destination for kids with rare diseases.

Recently, CHOC specialists started treating a 3-month-old with Hurler syndrome, another serious and neurodegenerative condition. The family drove across the country because CHOC is the only site in the world that has a clinical trial of gene therapy for their son’s condition.

Because the family will be staying at CHOC for at least through April 2021, a team of three study coordinators — Nina Movsesyan, Harriet Chang, and Ingrid Channa – helped the family get settled in at an Airbnb in Irvine.

“Our case managers and financial coordinators were crucial in getting the infant’s weekly enzyme therapy approved within a week’s time, and our excellent nurse practitioner, Rebecca Sponberg, asked purchasing to procure the enzyme drug for the baby on two days’ notice,” notes Dr. Wang, a metabolic specialist and director of CHOC’s Campbell Foundation of Caring Multidisciplinary Lysosomal Storage Disorder Program.

Dr. Wang says CHOC became an active site for the RGX-111 gene therapy after treating a child from a family in Indio in 2019. Another 14-year-old girl from West Virginia has received the same treatment.

“All of these cases wouldn’t be possible without the awesome teamwork from team members, who all are dedicated to the mission of CHOC,” says Dr. Wang. “I think it’s pretty remarkable that people from all over the country are coming here for clinical care and research studies because of our expertise and what we offer them: hope for their beloved children.”

Dr. Raymond Wangs gives patient Ely a high-five
Dr. Raymond Wangs gives patient Ely a high-five

A true team effort

For the Brineura infusions, which are administered by pediatric neurosurgeon Dr. Joffre Olaya, CHOC metabolic specialists work closely with providers in CHOC’s Neuroscience Institute.

Susan See is nurse manager of CHOC Hospital’s neuroscience unit, where the patients receive their infusion and stay for care afterward.

“We quickly put together a comprehensive program that really treats the patient and family not just medically, but also from an emotional support standpoint,” she says.

Batten disease especially is terribly cruel because its symptoms typically hit just as parents are starting to enjoy their child reaching several developmental and cognitive milestones such as walking and talking.

Untreated, the disease eventually takes all that away.

“What makes them who they are gets rapidly erased,” says Dr. Wang. “As a practitioner, it’s hard. I’m trying to imagine being in the shoes of a parent knowing this is going to happen to their child.”

For Bekah Bowman and her husband, Daniel, the diagnosis for Titus and, two months later, Ely, was like being on a high diving board and being shoved off and bellyflopping into the water.

“We had to learn what little control we have in life,” Bekah says.

The Bowmans worked closely with Dr. Wang to get the Brineura clinical trial launched at CHOC.

“When we met Dr. Wang,” Bekah says, “he told us: ‘We don’t have the answers for you right now, but I want you to know we’re going to keep fighting and we’re not going to give up.’”

Brineura families form tight bonds with their team at CHOC, which includes eight nurses who have been trained to care for them: Allison Cubacub, Genevieve Romano-Valera, Anh Nguyen, Melissa Rodriguez, Kendall Galbraith, Annsue Truong, Monica Hernandez, and Trisha Stockton.

The team at CHOC say goodbye to Ely and his family before they moved to Idaho
The team at CHOC say goodbye to Ely and his family before they moved to Idaho

Some families, including the Bowmans, have moved on from the program at CHOC when Brineura infusions became available near their hometowns. The Bowmans returned to their native Idaho outside Boise in October 2018. Leaving CHOC was difficult.

“That was one of the hardest goodbyes we had to say,” Bekah says.

All Brineura patients receive the transfusions on the same day – something unique to CHOC, Susan says.

“We learn what is unique about each patient and we become very close to them,” she adds. “It really reminds us why we said yes to nursing. What we thrive on is being able to care for families.”

Quick to action

Laura Millener, the mother of Max, CHOC’s latest Brineura patient, says she selected CHOC for Max’s condition, diagnosed in January 2021, because he needed to be treated right away. She first spoke to Dr. Wang on Jan. 11, and Max got his first infusion less than a month later.

“You could just tell how much he cares about his patients,” Laura says of Dr. Wang.

Max plays at CHOC while receiving treatment for Batten disease
Max plays at CHOC while receiving treatment for Batten disease

Says Dr. Wang, who has three children ages 10 to 18: “I count [my patients and my families] as my extended family, and I want the best for all of them.”

Laura and her husband, Matthew, a C-5 pilot in the U.S. Air Force, will be relocating to Quantico Marine Base in Virginia this summer from Pleasantville, Calif. Max, who has a 6-year-old sister, Ella, will continue his Brineura infusions at Children’s National Hospital in Washington, D.C.

“I don’t want to leave CHOC,” Laura says. “CHOC has done such an amazing job of making this easier on us. I am so grateful for the team.”

Dr. Wang says the Brineura infusions have made it possible for the patients to maintain meaningful interactions with their parents and siblings – despite having such conditions as, in Ely’s case, blindness.

Ultimately, the goal is for CHOC to be considered for a gene therapy clinical trial aimed at giving brain cells the ability to produce the missing enzyme by itself so Batten disease patients wouldn’t have to receive infusions every two weeks. Dr. Wang says such a trial could happen this fall.

“If there’s anything in my power I can do to help these families,” says Dr. Wang, “I’m going to try to make it happen.”

Learn more about CHOC’s metabolic disorders program.

Seamless primary and specialty care: Lea’s story

For parents of children who need specialty care on top of their typical visits with pediatricians, CHOC’s growing Primary Care Network offers seamless integration with more than 30 specialty areas represented by CHOC’s mighty brigade of pediatric specialists.

Lea, age 4, has seen a CHOC specialist since before she was born. Lea was diagnosed in utero with hydronephrosis – a treatable condition in which urine gets trapped in the kidney and drains slower than it should into the bladder. A routine ultrasound flagged fluid in Lea’s kidney, and her mom was referred to CHOC’s urology program for a fetal consultation.

Dee Dee, Lea’s mom and a longtime CHOC employee, knew her daughter was in good hands.

“The urologist explained everything in a way that was easy to understand,” Dee Dee recalls. “I was comforted knowing that this condition was common, my daughter would be OK, and that they would continue to monitor her and manage the condition after she was born.”

Dee Dee chose to deliver at St. Joseph Hospital in Orange for its proximity to CHOC. Doctors weren’t concerned that Lea’s hydronephrosis would cause her any immediate harm, but it gave the first-time mom peace of mind knowing that CHOC was right across the street.

Specialty care with CHOC’s urology program

Lea returned to CHOC’s urology program after she was born for additional testing and monitoring.

baby ultrasound
When she was 1 month old, Lea returned to CHOC for an ultrasound.

Urologists confirmed the prenatal diagnosis and also diagnosed Lea with vesicoureteral reflux or VUR, where urine flows backward. Lea’s VUR is due to wide ureters – tubes located between the bladder and kidney, and essential to proper urine flow – and valves that are too small to efficiently direct urine flow.

Some children with VUR grow out of it without the need for medical intervention. This is less common in children with higher grade openings between the kidney and bladder, as is Lea’s case. Doctors explained to Dee Dee and her husband Pat that over time, VUR can lead to infections in the kidneys. Eventually, a high number of these possible infections can lead to kidney damage.

After receiving Lea’s diagnoses, Dee Dee and Pat switched their daughter’s pediatrician to one in CHOC’s Primary Care Network.

“We realized that if we were going to need specialty care for our daughter, we wanted a pediatrician in the CHOC network to fit into that puzzle,” Dee Dee says. “CHOC is the best partner in caring for our child.”

MRI prep
At age 1, Lea underwent an MRI in preparation for her Deflux injection. Before her MRI, she played with her dad.

Lea has remained under the care of CHOC urologists, who continue to monitor her VUR. This has included two voiding cystourethrograms (VCUG). With this test, doctors insert a catheter and dye to fill Lea’s bladder, then take X-rays of fluid flowing in real time. Tests of any kind can be stressful for young kids, so child life specialists from CHOC’s Cherese Mari Laulhere Child Life Department have been present for each of these tests with Lea. Child life specialists are experts in normalizing the hospital environment for kids, but by being an extra source of comfort, they often put parents at ease, too.

“Child life has been amazing with Lea,” Dee Dee recalls. “During one VCUG, the child life specialist asked about Lea’s favorite song. At the time, it was “Wheels on the Bus” so that’s what she sang with Lea. I joined in the song, and before I knew it, every single clinician in the room was signing along to “Wheels on the Bus.” I remember thinking that even though the radiologist was so smart and so focused on performing the test, he was not above singing this song. He knew that is what my daughter needed in that moment to feel comfortable.”

Shortly after Lea’s first birthday, she underwent a procedure called a Deflux injection, where, under anesthesia, doctors injected a protein or ureter material to make the wall of Lea’s ureters thicker, hoping to close the gap and ensure proper urine flow, helping to continue avoiding UTIs.

Lea’s care team – including her parents – remain on high alert for a urinary tract infection or UTI, as a high number of these can contribute to kidney damage. Lea took preventive antibiotics until she was potty trained to help avoid UTIs.

age 3 ultrasound
Lea and her mom Dee Dee take a selfie during a recent visit to CHOC for an ultrasound

Lea sees her urologist Dr. Heidi Stephany a couple times per year, and they’re able to seamlessly communicate with Lea’s CHOC pediatrician, Dr. Katherine Williamson.

Primary care network

As part of CHOC’s growing health system, pediatricians in CHOC’s Primary Care Network not only have full access to any medical records from their patients’ specialty care visits, they can also see notes from recent visits to other providers, meaning they have the latest information on their patients’ medical history.

This coordination was especially beneficial for Lea and her parents on a recent weekend when Lea had a suspected UTI. Although common in children, with Lea’s VUR, potential UTIs are cause for concern.

Thanks to Saturday morning hours at Lea’s pediatrician’s office, they were able to get a last-minute appointment.

“With Lea’s condition being relatively rare, I’m used to explaining it to people,” Dee Dee says. “But when we saw Dr. Ball, he already knew her medical history and was very familiar with her condition. We typically see Dr. Williamson in that office, and she is well-versed in Lea’s health, but seeing Dr. Ball was seamless. It was such a relief not to have to explain anything to a new-to-us provider.”

A urine sample is a routine and necessary part of testing for UTI. These can be hard for children and parents alike, but Dee Dee felt grateful that Dr. Ball and his staff were patient with Lea.

“The whole staff was really patient with us, even though we were the last appointment of the day. They just kept coming in and checking on us to see how we were doing,” Dee Dee says. “The office also felt very safe during COVID-19; everyone was masked, and everything was clean.”

Ultimately, Dee Dee and Lea headed home with instructions to drink more fluids to help Lea produce a urine sample, and a plan to head to CHOC’s urgent care in Orange when Lea was ready. During this time, Dee Dee called CHOC’s urology team to confirm their course of action.

“I called the urologist on call, and even though it wasn’t Dr. Stephany, who we typically see and who is most familiar with Lea, the doctor who called us back had already looked at Lea’s chart and read Dr. Ball’s notes from that morning,” Dee Dee says. “He reassured us we were doing the right thing and validated my choice to bring her to CHOC’s urgent care.”

Lea continued drinking fluids to help produce a urine sample. When Dee Dee and Lea got to CHOC’s urgent care, they saw Dr. Vivi Tran, a CHOC pediatrician. Dr. Tran likewise could see Lea’s complete medical history and Dr. Ball’s notes from that morning, as well.

“I didn’t need to explain a thing,” Dee Dee recalls. “Dr. Tran was already up to speed, and that was such a weight off my shoulders.”

CHOC pediatricians know kids, and they know that rushing a child – especially to do something like produce a urine sample – will often have the opposite effect. Dr. Tran checked in with Dee Dee and Lea periodically, and even brought Lea an apple juice to help her produce a urine sample.

“CHOC made this as stress-free as possible for Lea and me. We were there for three hours trying to get Lea to produce a urine sample, and never once did I feel rushed,” Dee Dee recalls.

Lea’s UTI test was ultimately negative, and she had a regularly scheduled appointment with her urologist the next week.

birthday party
Lea recently celebrated her 4th birthday.

“The seamless coordination of care between Lea’s pediatrician’s office, her specialist and urgent care was unmatched. We could never find that anywhere else. I didn’t have to bring anyone up to speed on what was happening or my daughter’s medical history. They had access to her records and the latest information on her case,” Dee Dee says of her daughter’s experience. “I also know our positive experience wasn’t just because I’m a CHOC employee; everyone receives a high level of care.”

Mom’s perspective

Since joining CHOC’s marketing department in 2013, Dee Dee has had a firsthand look at CHOC’s patient- and family-centered care and has worked closely with a number of CHOC specialists. This recent experience with her daughter gave her a greater understanding of and appreciation for CHOC’s system of care.

“We write about various conditions every day and provide education on CHOC’s coordinated system of care. I already knew these things were true because of my job, but then I experienced it myself as a mom and I truly understood how beneficial these things are,” Dee Dee says. “It seems like the scariest thing in the world, to have a child who needs CHOC’s care, but it’s actually the most comforting thing.”

Advice from one NICU mom to another

By Amy Rogeness, mom to Cora and Ellie, graduates of CHOC’s Small Baby Unit

Having your child in the neonatal intensive care unit (NICU) or Small Baby Unit (SBU) is something that no one will ever truly understand until they experience it for themselves. It is hard to truly convey the emotional rollercoaster that exists when you have a child in the NICU. Whether your time in the NICU is expected or unexpected, a NICU stay is nothing that a parent wants to go through when welcoming their child (or children) into the world.

My twin daughters, Cora and Ellie, were born at 24 weeks and 3 days and immediately admitted to CHOC’s SBU, a special part of CHOC’s NICU designed for the smallest and sickest babies. Cora and Ellie stayed in the NICU for 136 days until they were finally ready to go home. You can read more about our family’s journey here.

Twins graduate small baby unit
Cora and Ellie

Before my twins were in CHOC’s SBU, if someone had asked me how I would cope with having a child in the NICU, I would have told them I wouldn’t be able to do it. Although my father is a neonatologist and I knew of the NICU and potential challenges parents can face, I honestly never imagined that I would have to go through something like that. I’m not sure that any parent really expects to be in that type of situation. I couldn’t have imagined a two-week stay in the NICU with one child, let alone a four-month stay with two.

Even looking back, it doesn’t feel real. Did we really do that? Did we really get through it? How did we find the strength to get through it? The answer is that we did it because we needed to – we had to – for our girls. Sometimes you discover a strength you never thought you had when the unthinkable happens.

My first piece of advice to other NICU parents is this: Be patient with yourself. Let yourself grieve for what you thought your child’s birth would be; this most likely isn’t how you imagined the beginning of their life to be.

Participate in your child’s care

Being at the hospital and being involved in your child’s care is not easy. While your involvement in their care is a key part of their treatment and helps establish connection between parent and child, it can be extremely anxiety-producing. Doing skin to skin when the babies aren’t stable can be terrifying. But, know that you are doing exactly what you need to do for them. This is something you have control over and something that will dramatically help their outcomes. It can feel overwhelming and scary, but this is your chance to care for them when you might otherwise feel powerless.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Remember that your baby — or babies — know you; they recognize your voice and they know your touch. Even though they are receiving extremely good care, no touch means more than yours. You are an essential piece of their care team.

One of the most amazing things my husband and I did was to start participating in the girls’ baths. When they were unstable, the girls would get a “bath” that included a small wipe down of their body. As they became more stable, they were able to get a bath in their bed. This included water and soap but did not happen in an actual tub yet. When the girls had their baths in bed, the nurses and respiratory therapists would work together to take off the girls’ breathing equipment to give their little faces a small break. The respiratory therapists would use an oxygen mask to ensure they had the proper breathing support during their bath. Thanks to this, we could actually see their faces and get closer to them for a longer period of time. Giving your child a bath is one of those things that feels so normal and something that all parents do.  As we bathed each girl, it almost felt like we were finally able to really see them for the first time as our children – see their features, their eyes, their expressions. It also felt like they could really see us for the first time, too. The connection we felt with Cora and Ellie during that first bath was amazing. I remember leaving the NICU the night of their first bath feeling lighter than air. I think it’s something that all parents in the NICU, especially the SBU, should experience.

A physical battle for the child, an emotional battle for the parents

A friend told me that during the NICU stay, your children have a physical battle and parents have an emotional battle. That was one of the most accurate things one NICU mom could say to another. As parents, you are in an emotional battle and it’s a hard one. Even when your baby becomes stronger and moves out of the critical stage, you enter another emotional phase of wanting and waiting to take them home.

In order to be there for them as much as you can, you need to take care of yourself. During our NICU journey, my husband and I made sure to prioritize going to therapy to work through the rollercoaster of emotions and the trauma of having extremely premature babies. Ensuring consistent therapy was extremely important and helpful in allowing us to be strong for the girls. As you go through the NICU, you will take care of yourself physically, but make sure to care for your mental health too; your mental health is just as important as your physical health. If you are struggling mentally, it will be hard to physically show up for your child. Your child is getting the best care possible at CHOC, and you need to take care of yourself, too.

Cora and Ellie after the NICU
A family photo on Thanksgiving, after the girls were discharged from CHOCs SBU

The NICU journey is unbelievably hard, but you are much stronger than you think. You will get through it, day by day, hour by hour, or sometimes even minute by minute. You might not think you can get through it, but you can, and you will. You will find a strength you didn’t know you had because you know that your child needs you. It might not feel like it when you are in your darkest moments, but I promise that you will look back and be astounded at what you did and what you endured for your child.

Our daughters’ NICU stay was the hardest thing we have ever had to do, and one of the hardest things we will ever have to do – but we did it, and you can too.

My experience as a NICU parent during the COVID-19 pandemic

By Amy Rogeness, mom to Cora and Ellie

My daughters, Cora and Ellie, were born in May 2020 at just 24 weeks and 3 days gestation. They spent several months in CHOC’s Small Baby Unit, a special unit within the neonatal intensive care unit (NICU) that cares for the smallest and sickest babies. You can read more about our SBU journey – and see how well the girls are doing now – here.

Having a child – or in my case, two children – in the NICU is hard, and something that’s difficult to explain to someone who hasn’t experienced it. Becoming first-time parents is hard; becoming parents to twins is hard; having your children in the NICU for 136 days is hard; doing all of that during a global pandemic is that much harder and came with added complexities.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Feeling safe during a pandemic

Despite the pandemic, we felt safe at CHOC. Our daughters were in the SBU, located on CHOC’s Orange campus, and we visited them every single day. Due to COVID-19, my husband and I were screened every morning before we could check in at the front desk to get a visitor’s badge.

Soon enough after going every day, the screening and front desk teams began to recognize us and would ask how our girls were doing. These small gestures of recognition and concern for our daughters made us feel so welcome and somehow managed to put a smile on our faces, even during the hardest times. The screeners and front desk representatives were invested in the girls’ fight and when we were discharged, they were so excited to hear that we were going home!

Our heroes

The entire team who cared for our daughters are our heroes. Every day the doctors, nurses, respiratory therapists and developmental therapists came to work despite the pandemic. Even during a major health crisis that affected them professionally and personally, they cared so deeply for our girls. Although a scary situation outside of the hospital, when we were in the hospital, it felt like a small oasis away from the uncertainty of the pandemic because the CHOC care team gave the same level of care and concern to our girls that they would have provided during non-pandemic circumstances. Our girls wouldn’t be here without the work of a great medical team at CHOC.

Video: Amy and Brian holding Cora and Ellie in CHOC’s Small Baby Unit

The care team supported Mom and Dad, too

Being in the NICU during a pandemic dramatically changed our experience due to the safety protocols in place to protect the patients and employees. Normally CHOC’s NICU and SBU offers opportunities for parents to meet one another and get together for emotional support. Under normal circumstances, other visitors are allowed, which can help parents emotionally. My husband and I were lucky to have the ability to visit the girls at the same time, due to having twins, but our friends and family were not allowed to visit the girls. We completely understood the importance of a limited visitor policy to reduce the number of people in CHOC buildings during the pandemic, but that meant we relied that much more on the healthcare team for emotional support. The nurses and therapists became our friends and allies during our girls’ fight in the NICU. They celebrated with us, they were our shoulders to cry on, and they were the ones encouraging us to keep going. Not only did they provide excellent care to the girls, but they provided emotional care to my husband and I as parents – even during a pandemic, when they were also experiencing uncertainty in their own lives. This professionalism and personalized care made our experience bearable, daresay even enjoyable at times, because we could connect with them and laugh with them – important interpersonal connections that made us feel like we would get through to the other side.

Thanks to CHOC’s doctors, nurses and therapists, my daughters are doing well, and our family made it through this experience, and I’d like to express my appreciation for all they did for us, especially during a pandemic.

Seeing CHOC from a new perspective

I am in absolute awe of CHOC and its employees. I have always loved and admired CHOC; I grew up connected to CHOC and knew of the amazing work being done throughout the health system. But I was connected through being a doctor’s daughter and a member of the Orange County community; now I am a CHOC parent.

For the first time, I experienced the world-class care CHOC is known for, and the concern and dedication that everyone at CHOC shows to patients and their families. I cannot emphasize enough the highest level of concern for the patient, and the family-centered care delivered at CHOC.

I know that our story is just one example among thousands of others – stories of how much CHOC has done for patients and their families, not only to help heal a patient’s body, but also help them heal emotionally, as well.

Thank you, CHOC, for taking such good care of my daughters – and my husband and me – during our NICU experience throughout the pandemic.

Families giving back: Spotlight on BraveOnes Foundation

Rose & Jeff Kunze and Kendra & David Rosales have been longtime friends. They have seen each other through thick and thin, but never imagined having to support one another through the loss of a child.

Rose and Jeff’s son Hendrix  was admitted to CHOC’s neonatal intensive care unit (NICU) when he was born, due to genetic challenges.

BraveOnes family photo
Hendrix and his parents

Though Hendrix faced many health obstacles, it was clear that he was a fighter from the beginning. However, after a brave battle, Hendrix passed away from organ failure due to infantile spasms shortly after his first birthday. After he passed away, test results showed he had a very rare genetic disorder called OTUD5.

Creating a legacy

 What do you do when your best friend loses their child? This was a question Kendra kept asking herself. Both families were searching for a way to honor Hendrix. “You can either choose to be angry, upset and frustrated or you can choose to be grateful,” Kendra recalls. So, spurred by the love and gratitude they felt for Hendrix, the couples banded together to create the BraveOnes Foundation.

BraveOnes team photo
A BraveOnes Foundation team photo, taken before the COVID-19 pandemic.

The group has made it their mission to create childhood joy. The Kunze and Rosales families reflected on what brought hope during their darkest days while Hendrix was undergoing treatment and decided to bring some of that hope and joy to other children and families going through similar experiences. They have focused on two initiatives — funding a new neurology playroom at CHOC Hospital in Orange and providing meaningful meals to families.

 Providing childhood joy even during treatment

 During Hendrix’s short life, CHOC’s Neuroscience Institute — including to the first children’s hospital in California to be named a Level 4 epilepsy center — became his home away from home.

Because of Hendrix’s seizures, he underwent a lot of testing, which limited his ability to leave his hospital bed or room. Telling a growing child they have to stay in bed for extended periods of time can be challenging for clinicians and parents alike, and, can take a toll on families. The Kunze family had longed for a change of scenery for Hendrix, even if it was simply in another room where it would be safe for him to play.

Because of this experience, the BraveOnes Foundation’s first initiative was to fund a new neurology playroom. Through their extensive community and tribe of supporters, they quickly reached their fundraising goal of $120,000 for the specialty playroom. These funds will allow CHOC to expand the current playroom on the neuroscience unit, install wireless electroencephalogram (EEG) monitoring capabilities, offer enhanced sensory play with a tactile wall, install padded floors for added comfort for patients experiencing seizures, and purchase neuro-friendly toys for children of all ages.

“Imagine instead of needing to stay in your room for EEG monitoring, having a portable monitoring unit —you’re plugged into a backpack that allows you to move and continue your testing while also being in a room that has swings and sensory floors,” Kendra says.

Their vision for the playroom — planned in collaboration with CHOC experts — was to provide a space where children are not confined to their beds but can play and regain some of their childhood.

 Hope on a plate

Keenly aware of the struggle families face when they have a child in the hospital, and the sense of normalcy a catered meal can provide, the Meaningful Meals Program within the BraveOnes Foundation was created to provide dinners to families in CHOC’s neuroscience unit on a monthly basis.

Rose recalls a particularly difficult day when Jeff was at CHOC with Hendrix and the sense of relief he felt by receiving a free bagel. “He said, ‘I got a bagel and coffee and I feel like I can conquer the world,’” Rose recalls. “It was as if they had given him hope on a plate.”

Meaningful Meals quickly became a reprieve for families and relieved them of having to leave the hospital floor to get food so they could focus on supporting and making memories with their children. To date, BraveOnes has provided 1,500 meaningful meals to families at CHOC.

Creating joy during a global pandemic

Throughout the COVID-19 pandemic, BraveOnes started providing morale-boosting meals to hundreds of CHOC’s front-line caregivers.

The remodel of the neurology playroom is currently on hold due to the pandemic, but the BraveOnes Foundation still wanted to bring joy and light to children and families at CHOC. Through a generous donation during the holiday season, the group purchased enough Xbox gaming consoles for each patient room on CHOC Hospital’s fifth floor.

Hendrix’s legacy lives on as the BraveOnes Foundation continues to spread childhood joy.

Of her son’s legacy, Rose says, “I don’t ever think of Hendrix as a tragedy, but rather turning the unfortunate things he went through into joy. He showed us that there can be joy after heartbreak.”