Meet Jeff and Rose Kunze of BraveOnes Foundation in Huntington Beach

Today we’d like to introduce you to Jeff and Rose Kunze.

Jeff and Rose, let’s start with your story. We’d love to hear how you got started and how the journey has been so far.
In the Fall of 2015, after being together for the better part of 17 years, my wife and I were thrilled to find out we were expecting our first child. I still remember the moment she told me, it was such a surreal experience knowing our life was forever changed. Observing people progress through the stages of life is one thing, but to navigate these stages yourself invokes feelings you didn’t know you had. This was going to be our modus operandi (aka M.O.) over the next year and a half. Having already heard our baby’s heartbeat at the 10-week prenatal check-up, we were eager to know and see how much they had grown at 19 weeks. This appointment was to be filled with the joy and excitement of the first ultrasound, getting a sneak peek at our newest loved one, and finding out if we were to have a girl or a boy. Instead, our 19-week prenatal appointment is etched in my brain as being hit with our first thunderbolt.

I remember the ultrasound tech doing what I thought was her normal routine, checking each system, measuring growth, etc. She shared we were having a BOY! Our hearts were filled with love and wonder as we now would have to agree on a name, which was unsuccessful up to that point. When the tech was done, she mentioned that the doctor needed to come to speak with us and it did not even cross my mind that anything was wrong. The next part was a bit of a blur and did not really sink in until later. The doctor entered the room and broke the news that our son’s heart, brain, and kidneys were not developing properly. It’s then that we both entered a state of mild shock. As we left the office, thoughts began racing through my mind faster than I could process them. This shock remained until our 24-week check-up when the medical team added our son’s skeletal system to the list of things that were underdeveloped and used phrases like “possible skeletal dysplasia.” However, due to the fact that no medical practitioners could give an actual diagnosis while in utero, this led to a multitude of specialists huddling in the delivery room waiting for our precious mystery baby to make his grand entrance.

Not knowing if your child is going to survive birth is a difficult thought to ruminate on. And, if they do survive, what will their quality of life be? Hendrix Christopher Kunze arrived mid-day on July 12, 2016, three weeks early after a scare while my wife was on hospitalized bed rest. Upon arrival, Hendrix was immediately whisked off to the NICU where he was assessed, monitored, and given a nasal cannula to keep his oxygen level up and nasogastric (ng) tube for feeding. From day one, he was a brave little warrior and transferred to Children’s Hospital of Orange County (CHOC) NICU at three days old. Ultimately, Hendrix spent four weeks in the original CHOC NICU, sharing one room with seven other babies. Through this experience of spending endless hours together advocating for our children and sharing support through a hospital curtain, we had the opportunity to bond with some of our “roommates” and the amazing CHOC staff, who continue to remain close and hold a special place in our hearts.

During Hendrix’s CHOC NICU stay, he continued to be a mystery baby. At only days old, he kept us on our toes as he required his first blood transfusion, EEG, EKG, echocardiogram, etc. Several specialists evaluated his case and ran test after test, including multiple genetics tests, without shedding any real light. As Hendrix grew stronger, his goal shifted from survival to actually going home. This could only happen though if Hendrix was able to breathe and feed on his own. His independent breathing was slowly improving, but he could barely drink a few milliliters through a bottle. Due to this, we agreed to have a G-Tube surgically inserted and were trained on how to prepare his feeds and operate his new equipment.

On the evening of August 12, 2016, Hendrix was finally released from the CHOC NICU. I remember driving home wondering if we were up to the task of carrying for our son, who required 24/7 care. Hendrix came home with a G-Tube, feeding machine, sleep apnea machine to alert us when he was not breathing, multiple medications, and was what we thought to be a fragile newborn baby. However, during the next few months, Hendrix not only changed our perspective of him being fragile to a brave little warrior but also about reality as a whole. Hendrix’s life was filled with hurdles after entering this world, but he always rose to the occasion with an amazing temperament; almost like he had chosen this path.

Over the next year, he had multiple surgeries, further symptom diagnosis without an underlying cause, and attended 4-7 medical appointments per week – with his case being monitored by over ten medical specialists. The struggle to balance Hendrix’s weekly appointments became a complicated 3-4 hour routine of packing up his medical equipment, feeds, medications, etc., driving to the closest appointment location, and waiting a long time for a short “check-in.” Doing all this, while also working around our full-time work schedules, became a bit of a circus and greatly exposed Hendrix’s weakened immune system. Eventually, we were able to get insurance approval for in-home physical therapy and occupational therapy. These 2-3 weekly in-home appointments were a true game changer and allowed us to have more quality time as a family. Hendrix had an uphill battle, but he seemed to be progressing in the right direction and we were amazed by his patience and calming presence. As we approached his first birthday, we began to reflect on his journey, blessed that we had this little munchkin in our life.

My wife was the first to notice something was “a little off.” Hendrix began not to smile as often and his development regressed. We took him to CHOC, which had become our home away from home, and he was diagnosed with infantile spasms, a severe type of seizure. After medications were attempted, including giving him two shots a day, Hendrix continued to have infantile spasms and developed a movement disorder that only allowed him to sleep for 4-6 hours per day. During this time, Hendrix spent the majority of several weeks inpatient at CHOC in the Neuroscience Unit. We were finally able to take him home with a whole new regimen and the need for 24-hour nursing care, requiring my wife to resign from her teaching position. Being home was the goal, but it was short lived with an urgent 911 call one night later as Hendrix turned blue and was rushed to the nearest hospital. Sitting with your one-year-old, watching a tear roll down your wife’s face, feeling helpless as he flatlines and the medical team attempts to revive him, changes you forever. Hendrix survived this horrific night and was placed on life support. After three endless days filled with exhaustion and still grasping for hope, my wife and I made the heartbreaking decision to let him go. As my wife held Hendrix while he gasped his last breath, a five-minute rain and thunderstorm rolled through with the precision to almost offer a blessing to this short life.

My wife and I grew and learned so much throughout our year with Hendrix. This led us to a new perspective and direction in life. To honor Hendrix’s brave, yet short time here, and to help create joy for children in need, we launched BraveOnes Foundation one year after his passing along with our lifelong, friends Kendra & David Rosales. Furthermore, we created Bridge2PT, a physical therapy platform that gives patients access to convenient, quality healthcare similar to what Hendrix was blessed to have.

Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Some might say our greatest challenge has been our journey as Hendrix’s parents. To be honest, this was only the beginning. Even though Hendrix is not physically here with us, we see him in the children and families we meet and created BraveOnes Foundation as a way to give back in his memory. Having never been a business owner and launching BraveOnes out of the desire to bring joy to children faced with uncontrollable challenges, we have had to learn to navigate the “ins and outs” of running a nonprofit organization. Luckily, we have had an abundance of support from our family, friends, and community to help us on our endeavor. Obstacles present themselves everyday and our strategy is to remain fluid and open-minded. While these obstacles tend to thrust us back into the realities of running a nonprofit, we try to focus on what we have learned throughout our journey – the relationships we share with our loved ones may be the most important aspect of our understanding of reality. Through BraveOnes Foundation, we are driven to help support and foster these relationships through any challenges that present themselves along the way.

In addition, we are launching an online, concierge physical therapy platform that allows patients to search for and book local Physical Therapists to come to their home or work. After months of packing up Hendrix’s medical necessities for 4-7 appointments each week, shifting to 2-3 of these taking place in our own homemade an enormous positive impact. Through this experience, we became aware that all people should have access to this type of service, not only for convenience but to allow patients the opportunity to spend quality time with their medical practitioner in order to address all aspects of health and wellness.

Alright – so let’s talk business. Tell us about BraveOnes Foundation – what should we know?
BraveOnes Foundation is a 501(c)3 nonprofit organization with a mission to raise awareness and resources for children in need that allow them to focus on the joys of being a child. We currently have two main campaigns, in addition to helping individual children and families along the way.

BraveOnes’ primary campaign is to help fund a new CHOC Neuroscience Unit Playroom. In 2018, the CHOC Neuroscience Unit completed almost 3,000 EEG diagnostic tests, served close to 1,200 pediatric patients over 5,000+ inpatient days, and cared for children with all neurological disorders. To support these courageous children, BraveOnes Foundation made our first $25,000 campaign contribution towards the $300,000 CHOC Neuroscience Unit Playroom project in November 2018. In Spring 2019, we anticipate to donate an additional $40,000 as well.

Along with our CHOC playroom campaign, BraveOnes is partnering with local restaurants to provide ongoing BraveOnes Meaningful Meals for families while their children receive treatment in the CHOC Neuroscience Unit. As parents, when we were balancing full-time work and trading off staying with Hendrix at CHOC, there was little time for our basic needs, such as eating and sleeping. On the rare days when CHOC was able to provide something as simple as a bagel and coffee, it made a huge difference in relieving some of our stress and allowed us to focus on Hendrix. With this in mind, BraveOnes is truly grateful for our current partnerships with BJ’s Restaurant (Main St. Huntington Beach), Stonefire Grill (Fountain Valley), and Las Barcas Mexican Restaurant (Huntington Beach) that make these meals a reality for the courageous families.

Bridge2PT’s mission is to connect skilled licensed Physical Therapists with patients in need of convenient, high quality, personalized, and one-on-one medical care that addresses all aspects of health, wellness, and healing. We understand that today’s healthcare system consists of limited time with an actual medical practitioner, a focus on the treatment of current symptoms, and lack of addressing prevention opportunities. The Bridge2PT platform allows patients to book a convenient appointment with a Physical Therapist of their choosing via a profile page, who will come to their home or business to provide quality, one-on-one treatment for an hour.

Is there a characteristic or quality that you feel is essential to success?
Compassion, empathy, and the ability to listen. There are almost 8 billion people on this planet and each of us experiences a very different reality. To truly listen to one another and hear what the next person is saying, will allow for deeper understanding and connection to occur. Hendrix gave us the gift of experiencing the most powerful love and loss in a very short period of time. We now can empathize with people sharing a similar existence. Compassion will fuel our desire to use our platform in any way presented to help others.

Contact Info:

• Address: 9151 Atlanta Avenue #8384, Huntington Beach, CA 92615
• Website: BraveOnesFoundation.org
• Phone: 657-204-6935
• Email: [email protected]
• Instagram: /BraveOnesFoundation
• Facebook: /BraveOnesFoundation
• Twitter: @BraveOnesFDN

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