Rose & Jeff Kunze and Kendra & David Rosales have been long-time friends. They have seen each other through thick and thin, but never imagined having to support one another through the loss of a child.
Hendrix, Rose and Jeff’s little boy, was born on July 12, 2016. Doctors determined early during Rose’s pregnancy that Hendrix wasn’t developing as expected. Soon after his birth, Hendrix was admitted to CHOC’s neonatal intensive care unit (NICU) due to genetic challenges.
Though Hendrix faced many health obstacles, it was clear that he was a fighter from the beginning. However, some fights become too much, and sadly Hendrix passed away shortly after his first birthday from organ failure that resulted after infantile spasms. After his passing, doctors determined 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. The Kunze family was asking themselves a similar question. They 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 of their own brave one, Rose, Jeff, Kendra and David founded the BraveOnes Foundation in 2018.
Since that time, BraveOnes has made it their mission to create childhood joy. Childhood joy can come in many forms—from providing space and time for play to giving a simple meal to an impromptu concert. 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 by focusing on two initiatives: funding a new neurology playroom at CHOC and providing meaningful meals to families.
Providing childhood joy even during treatment
During Hendrix’s short life, CHOC’s neuroscience department—which is one of only four pediatric epilepsy centers with a level 4 designation in California—became his home away from home.
Because of Hendrix’s seizures, he often had to go through days worth of testing, which greatly limited his ability to leave the hospital bed, let alone the room. Keeping a growing child in bed for hours and days on end can be incredibly challenging, but so much time can take its toll on families as well. The Kunze and Rosales families knew all too well how four walls could begin to close in. They 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.
Thus, BraveOnes’ first initiative was to fund a new neurology playroom. Through their extensive community and tribe of supporters, BraveOnes quickly reached their goal of raising $120,000 for the new playroom. The updated playroom will not only expand the current playroom size, but will also have wireless electroencephalogram (EEG) monitoring capabilities, enhanced sensory play with a tactile wall, padded floors for added comfort for patients experiencing seizures, and neuro-friendly toys for children of all ages.
“Imagine instead of being plugged into a wall, you were plugged into a backpack that allowed you to move and continue your testing while also being in a room that had swings and sensory floors,” Kendra says. Their vision for the playroom dares to image a place where children are not confined to their beds, but can play and regain some of their childhood…a vision they hope to see realized soon.
Hope on a plate
Keenly aware of the struggle families face when they have a child in the hospital, the Meaningful Meals program 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 transportive reprieve for families and relieved them of having to leave the hospital floor to get food so they could focus and make memories with their children. To date BraveOnes has provided 1,500 Meaningful Meals to families at CHOC.
Creating joy during a global pandemic
Like many things in 2020, COVID-19 changed what BraveOnes could do within CHOC’s walls. While the pandemic halted the ability to provide meaningful meals to CHOC families, BraveOnes quickly shifted gears to provide morale boosting meals to more than 300 of CHOC’s frontline caregivers.
And even though the neurology playroom remodel is currently on hold due to COVID-19, BraveOnes still wanted to bring joy and light to children and families at CHOC during the holidays. Through a generous donation, BraveOnes purchased enough Xboxes for each patient room on CHOC’s fifth floor.
It is evident that Hendrix’s legacy continues to live on BraveOnes continues to fight for childhood joy. Rose said it best: “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.”