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.”

5 ways to spread joy to CHOC patients this year

Illness and injury shouldn’t dim the brightness of the holidays for kids. Help us preserve the magic of childhood – year-round – for our patients by supporting CHOC the following ways this holiday season:

Donate

By donating to CHOC’s greatest needs fund, you will support patients like Grant, who received life-saving care at CHOC. Your gift will be matched dollar-for-dollar by Extra Life, a Children’s Miracle Network partner of CHOC! Learn more about Grant, and CHOC’s greatest needs fund.

Bring smiles through our Virtual Toy Drive

Although we can no longer accept in-person toy donations, you can help us brighten our patients’ and families’ holidays a few other ways: donating, giving through our Amazon Wish List, or creating your own Virtual Toy Drive. See our wish list here.

Register for Virtual CHOC Walk

Take part in a celebration of CHOC by joining our Virtual CHOC Walk presented by Disneyland Resort. Register here.

Shop for CHOC

Many stores and restaurants will give back a portion of your purchase to CHOC. Give back while you shop by finding participating stores.

12 Days of Gaming

Starting December 1, CHOC is asking you to level up your commitment during December and turn your virtual holiday party, secret Santa gift exchange, or ugly sweater day into another cool opportunity to give the gift of health through Extra Life. Setup your holiday themed Game Day today.

From CHOC patient to CHOC donor: Katrina’s story

When Katrina, now age 28, was a teenager, she knew about type 1 diabetes because her friend had it – she just never expected to be diagnosed herself.

Katrina’s journey to a diagnosis started after she experienced typical signs and symptoms of type 1 diabetes – weight loss and extreme thirst, among others.

During a cheerleading practice, she mentioned she felt thirsty “all the time” and her mom’s ears perked up. This prompted a trip to her pediatrician, who tested her blood sugar levels. They were 707, and a typical 13-year-old’s levels should have been around 100.

“Being diagnosed with type 1 diabetes at age 13 was life-changing,” Katrina says. “But having my best friend and her brother with type 1 and their mom being a nurse helped me navigate the early days of it and not go in blind.”

She adds that the support she received from her CHOC team in the early days of her diagnosis also made the transition into her “new life” much easier.

“The care that I received at CHOC was above and beyond,” Katrina says. “That time in a girl’s life can be the hardest of all – the stress of high school, hormones and sports to name a few – but it was definitely so much easier with the help of Dr. Clark.”

Her primary pediatric endocrinologist was Dr. Susan Clark, a longtime CHOC physician and nationally-recognized expert in diabetes and endocrinology who passed away in 2017.

“Dr. Clark was the reason I became so successful in managing diabetes. She always had a positive outlook,” Katrina says.

As counting carbs and taking daily insulin injections became her norm, Katrina also began quarterly checkups with the endocrinology team at CHOC.

“I always came to appointments with so many questions. I’m a sweet tooth, and no matter what food I asked my team about eating, they would always come from a place of, ‘Yes you can have anything you want. We will help you figure things out safely,” Katrina recalls. “I was in high school at the time, and if my friends were going to 7-Eleven to get ICEEs, I didn’t want to feel held back; I just wanted to be able to enjoy my adolescence.”

Also notable about her frequent appointments, Katrina says, is that Dr. Clark and her team took the time to truly partner with her and allow her to take an active role in her own care.

“Dr. Clark would address me first – not my mom or dad. She asked her questions to me. ‘How are things going? What do you want to change?’” Katrina recalls. “It’s easy to feel belittled at that age, but Dr. Clark always treated me like an adult and made me feel empowered.”

For those reasons, Katrina considered her CHOC visits not a chore, but “like going to see an old friend.”

Although Dr. Clark primarily managed her care, Katrina became familiar with other endocrinologists and staff at CHOC during her frequent appointments – including Dr. Mark Daniels, medical director of pediatric endocrinology at CHOC.

Dr. Mark Daniels
Dr. Mark Daniels, medical director of pediatric endocrinology at CHOC

CHOC experience inspired her career

Katrina’s career interests were ultimately impacted by her CHOC experience. After college, she joined CHOC as an intern, working on with the research team for CHOC’s endocrinology program.

“My experiences at CHOC were so positive that my career interests flipped to the medical field. Having the chance to work with the endocrinology team that diagnosed and took care of me was like a dream,” Katrina says. “Interning at CHOC confirmed in my mind that if you have a child and something happens – diabetes or anything else – CHOC is the best place you can find. Everyone genuinely cares about the patients and employees.”

As part of her internship, she shadowed Dr. Daniels.

“His rapport with patients and the rest of the medical team was amazing. He knows how to talk to anyone and make them feel empowered, and like what they have to say is important,” Katrina recalls. “He was always so much fun to have a conversation with because I would always learn something new.”

Transitioning to adult care

Katrina’s care was transitioned at age 21 out of CHOC to an adult doctor, which she has found to be a much different experience than the one she had growing up.

“When I was at CHOC, all my appointments felt like open conversations; they never used an accusatory tone. I was empowered to make safe, health decisions. I was part of the solution,” she says. “At my adult doctor, sometimes I think, ‘You don’t have diabetes. You don’t get it.’ But when I was at CHOC, my walls were always down.”

Around that time, she met her now-husband Jake at a fundraiser for PADRE Foundation (Pediatric Adolescent Diabetes Research & Education) – a non-profit that serves thousands of Southern California families living with type 1 diabetes through free education classes taught by CHOC educators and a variety of youth and family programs.

Jake, a firefighter, has been living with type 1 diabetes since he was diagnosed at age 3.

Giving back

Given Katrina’s diagnosis and her family’s philanthropic spirit, raising funds to find a cure was a natural way for the family to give back to CHOC. Starting in 2009, the family of runners organized yearly charity races, dubbed Katrina Kures, to raise money for CHOC researchers who are studying diabetes. To date, the family has raised nearly $200,000.

Katrina speaks at Katrina Kures fundraiser
Katrina addresses the crowd at a Katrina Kures fundraiser

“Part of why we give back to CHOC is that we’ve had such a positive experience there as a family. If we had had a negative experience, we wouldn’t do what we do for CHOC,” says David, Katrina’s dad. “CHOC takes as much of an interest in research as we do. Every time we go to CHOC, you can tell they’re doing something amazing. You can see how CHOC is helping the most vulnerable and the most innocent. We want the money to go toward research for a cure. I hope the cure for diabetes will happen in my lifetime. It’s getting closer.”

Dr. Daniels and his team oversee the funds raised and donated annually by Katrina’s family.

“Dr. Daniels is at the top of his game for research. Whatever he thinks will have the most impact on finding a cure, we’re all in,” says Beth, Katrina’s mom.

The high opinion the Jewell family has of Dr. Daniels goes both ways.

“The Jewell family’s continued dedication to making a better future for people living with type 1 diabetes is truly inspiring. Every time I am around Dave, Beth, their son Jesse, Katrina and Jake, I feel the passion that they have for this cause, and it motivates me and everyone in their presence to work harder, be better and strive for a permanent solution to diabetes. They are my heroes,” Dr. Daniels says.

check presentation
Dave and Beth present a fundraising check from Katrina Kures to Winnie Tran, CHOC Foundation’s director of community engagement, and Dr. Daniels

Finding a cure is especially important to Katrina, as she and her husband will soon expand their family.

“Having the money go toward finding a cure is huge, not just for us, but especially as we’re expecting our first child, it makes the cause so much bigger,” she says. “We’re very proud to be partnered with CHOC and excited about what’s to come.”

Advice to others with diabetes

Living with diabetes for nearly two decades has given Katrina a unique perspective on the disease. She hopes to give other people living with diabetes a message of inspiration.

“Consider what you can control and what you can’t control. Everyone goes through difficult times in life. Your outlook affects the way diabetes affects you,” she says. “Diabetes is a huge hand to be dealt. If I went into it with a negative mindset, I wouldn’t want to do injections, which would affect my blood sugar levels.”

Katrina and Jake hope to show others living with diabetes all that is possible, despite their disease.

“A lot of people’s preconceptions about diabetes come from knowing someone with type 2 diabetes,” Katrina says. “I want people to know that people with type 1 diabetes are just as free with food as you are; there’s just an algorithm running in our minds when we see a plate of food, and we’re making different calculations and decisions than you have to.”

As a paramedic and firefighter, Jake’s job is grueling and physically demanding. Many people didn’t think such a career was possible for him.

“In my paramedic program, we were learning about different medical conditions and they basically said that people with diabetes can’t exercise more than 30 minutes at a time and if they miss a meal they will become hypoglycemic, which isn’t necessarily true,” he recalls. “Diabetes is something that I live with and work with, but it doesn’t run my life.”

Katrina adds that having a strong team around you is essential to maintaining proper health and a positive attitude.

“Because I had a great support system, and the medical care I received at CHOC was so amazing, I was able to live a full life growing up,” she says. “I could do cheer team, earned above a 4.0 GPA in high school, go away to college and manage my diabetes on my own, go on runs and do half marathons. All of these are particularly big accomplishments for someone living with diabetes.”

Pharmacy delivery service brings medications and peace of mind to CHOC families

Jenna Castorena couldn’t believe her ears when she picked up a call in March from the Outpatient Pharmacy at CHOC Hospital. She was juggling a lot at the time, most importantly protecting her medically fragile son Robert from contracting COVID-19.

Robert, who has epilepsy, cerebral palsy, chronic lung disease and several gastrointestinal issues, depends on multiple medications. He needs them to control seizures, manage stomach troubles and prevent pneumonia. He was due for refills when his mom heard from the CHOC Pharmacy.

Robert-CHOC-patient-pharmacy-delivery
Robert

“It was amazing! The pharmacy called to let me know they would personally deliver Robert’s medications to our home so we wouldn’t need to venture out in the pandemic,” recalls Jenna. “I can’t imagine how much work went into creating this personalized service, but I am incredibly grateful to the team for always making the safety and wellness of patients a priority.”

CHOC launched the prescription delivery service at the start of the pandemic in California, as lockdown orders were taking place across the state. The temporary service was intended for all CHOC Outpatient Pharmacy patients, particularly for those with severely compromised immune systems. Some of the patients rely on public transportation, placing them at increased risk when out in public.

Since the service began in March, the Outpatient Pharmacy has logged more than 10,700 miles and delivered more than 3,400 prescriptions. A quarter of the medications are difficult to obtain in the community.

“Our goal is to ensure our patients receive their medications in a timely manner and without unnecessary risk during the pandemic. We want to keep them safe and healthy, and provide additional peace of mind to their families,” explains Grace Magedman, PharmD, executive director, pharmacy services, CHOC.

Long-time CHOC supporter Hyundai Motor America heard about the delivery service and was quick to lend support. The company was already in the process of donating $200,000 to CHOC’s COVID-19 Relief Fund. Their generosity inspired local dealer, Russell Westbrook Hyundai of Anaheim, to donate three Hyundai Santa Fe vehicles for use in delivering the medications.

“During these challenging times, it’s heartwarming to see the community come together, and we would expect nothing less from our friends at Hyundai,” says Magedman. “Our prescription delivery service has been a valued resource for so many families who must take extraordinary efforts to protect their children, and it couldn’t have been possible without the inspiring commitment of our heroes in Pharmacy and collaborating departments. We are grateful for the role we play in safeguarding the health and well-being of the community we serve, especially its most medically fragile members.”

What I’ve learned about life from my 3-year-old daughter

By Bud, father of Emma, a CHOC patient; and founder of the Squires Guild, a group part of the CHOC Foundation that connects patient parents with each other while raising awareness and funds for CHOC Hospital in Orange and CHOC at Mission Hospital

My daughter Emma, who is 3 years, 4 months and 8 days old, has a list of diagnoses that read like a medical textbook — I’m sure parents of CHOC can relate — but, her main diagnosis is pachygyria. It’s a congenital malformation of the cerebral hemisphere that results in unusually thick convolutions of the cerebral cortex, giving her brain a smooth appearance and giving my wife and I an excuse to call her a “smooth operator.” We also call her “the Kartoffel” which means potato in German because she looked like a potato when she was little. The name stuck!

Since her condition deals with the brain and is so severe, all of her other body systems are affected. She isn’t ever expected to roll, sit, walk or talk. She struggles with multiple forms of epilepsy and is expected to develop more forms. She also has poor swallow control, which could cause her to aspirate on foods or liquids.

We found out about Emma’s condition when she was 7 months old. She had missed a few developmental milestones and then started having infantile spasms. We are thankful that our pediatrician, Dr. Dawn Bruner, is part of CHOC Primary Care Network. She referred us to, CHOC’s Neuroscience Institute where we ultimately received Emma’s diagnosis.

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Bud with his daughter Emma.

With all the medical support we had (and still have), it was hard to take in the news of Emma’s diagnoses. Even after three years, it has been a continual process of mourning the loss of the life we thought we were going to have as well as a tremendous exercise in learning to love someone for who they are, and not who we want them to be.

There have been more medical emergencies with Emma than I can count, and often during those times, I feel inefficient, broken. Dads are supposed to protect their children, make it all better and make sure nothing hurts them. But caring for Emma has made me learn that I am just a different kind of dad than what I originally thought I was going to be. I am still strong and effective, and most importantly I have allowed myself to be totally me, just like Emma is totally her.

Emma is fearless. Anything she does, whether it’s laughing, crying, yelling or singing, she does with full conviction. She is the kind of person I hope to be like a little more each day. She is my absolute joy, the light of my life. I am but a humble peasant to my Princess Emma and I don’t mind at all.

bud-and-emma-at-home
Bud and Emma at home.

It is because of Emma that I am inspired to learn new music, read new books—all based on whether I think she would enjoy them. She has taught me that the more time and energy I put into pushing back against and denying the brutally honest reality that she will not live long or peacefully, the less time and energy I have to truly experience life with her. And as her dad, that’s my biggest joy in life — really living with Emma.

My greatest hope is that she knows that she is loved. I hope she finds her life, however long or short it might be and in whatever way she can, to be rich and meaningful — just like she’s made my life rich and meaningful simply by existing.