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.
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.
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
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.”
At CHOC, our team of board-certified specialists and neuroscience-trained staff provide a full spectrum of care for disorders of the brain, spine, muscles and nervous system.