“Dad, thank you for saving my life.” My 12-year-old son, Trey, began saying this to me a couple of months ago. It stunned me. I didn’t know what to say.
For months, he has been living with a ventilator and feeding tube. He understands the gravity of what’s going on. He hears my conversations with doctors. I’ve explained his diagnosis. He knows I’m doing everything I can to get him the best possible care. But I don’t see myself as “saving” him.
“You’re the strongest kid I’ve ever met,” I replied. “You’re the one doing this. I’m just doing what dads are supposed to do. I love you and would do anything for you.”
It’s hard to believe that early last year, he and I were playing outside, roughhousing, and laughing as usual. Our family was situated at our new home in Florida. My startup, Steady, was continuing to grow, helping millions of non-standard workers — gig workers, part-time and hourly workers, contractors and more — find extra income and expedite their receipt of public benefits.
Trey started to feel sick in May and got worse in June, but doctors kept saying it was a stomach virus. We were on vacation in Colorado in July when I suddenly had to rush him to the hospital. Virtually overnight, his life was in the balance.
Eventually, tests confirmed the diagnosis of a rare neurological autoimmune disease called Neuromyelitis optica spectrum disorder, or NMOSD. (We adopted him from Ethiopia, and NMOSD is more common among people of African descent.)
For the next several months, he remained at Children’s Hospital of Colorado, which fortunately had a wonderful clinical team. This strong, energetic, hilarious kid was reduced to lying in a bed, connected to machines, nonverbal, barely moving. On many occasions, his vitals deteriorated and I was afraid he wouldn’t make it through the day or night.
My days started at 6 a.m., filled with research, participating in rounds with numerous teams of doctors, and contacting everyone I could think of to ensure every possible treatment was considered. Amid it all, I was talking to Trey, holding his hand, suctioning his tracheostomy tube, washing his hair, drawing a different NBA player’s facial hair on him with a whiteboard pen each day, and trying my best to keep him entertained and comfortable.
Every morning, I would read him Kobe Bryant’s “10 Rules” poster, which I put in his ICU room. We would focus on rule #1, “Get better every single day.” I would highlight one way in which he was doing better — even something small like moving a finger or toe, or using a bell to play a song with the music therapist.
To communicate, he would make multiple attempts to select large letters with his wobbly hand on a sheet I held in front of him. He spelled out, “Am I going to be okay?” I told him I would fight for him every moment, while holding back tears as much as I could. I was also trying to check in multiple times per day with my daughter, mustering a smile and working hard to put one on her face, as she had returned home to Florida with my wife when school resumed. On the nights that I was able to leave the hospital, I collapsed in tears at the Ronald McDonald House.
In October, I was able to bring him to a hospital ICU in Florida via a fully staffed private medical flight. In November, he finally came home, where he has around the clock care, frequent weekly trips to specialists and immunotherapy infusions. Every time he has a slight fever or other problems, I must rush him to the emergency room. His prescriptions, durable medical equipment (DME), scheduling, altered education, insurance approvals and more require daily work.
I am his advocate and primary caregiver, the one person who understands and coordinates his needs. I’ve been trained to handle his medical equipment, identify worrisome symptoms and provide emergency life-preserving care, which I’ve had to use.
With help from terrific doctors, as well as Bill Guthy and his Guthy-Jackson Charitable Foundation, I was able to obtain initial insurance approval for off-label immunotherapy that provides him the likely best possible outcome. Out of pocket, it would cost nearly a million dollars a year. And while our insurance covered 12 hours of nursing care, I got supplemental Medicaid to cover the other 12 hours. But the healthcare worker shortage means nurses often cancel at the last minute.
I’m far from alone in having my life upended by a loved one’s illness. Millions of people are in similar situations.
Throughout all this, I’ve still needed to do whatever I can to support Steady — and, of course, the business experienced major challenges. We expected major growth in 2022, and I’ve been beyond troubled that I was unable to deliver. All this happened as the startup market and the tech sector have taken their steepest nosedive in at least 20 years.
Recently, I had to face the facts. It’s time to give up day-to-day leadership and administrative oversight of the startup I created and love. Fortunately, a Steady co-founder and its largest investor, Michael Loeb, has agreed to take the helm as interim CEO. He’s a long-time friend and mentor, the most brilliant entrepreneur I have known. He and his business partner Rich Vogel have been providing extremely valuable operational and financial support throughout this nightmare. Knowing I can hand the reins to him is a huge relief. I’ll take on a focused role growing SteadyIQ, our powerful data platform that provides for tremendous societal impact and business scale potential.
I feel filled with gratitude. For my team at Steady, who work so hard and have been amazing. For all the healthcare providers who have been part of this experience. For Trey’s friends, who checked on him constantly and now come over to hang with him and play iPad and VR games virtually with him. He knows he has a posse of kids who love him and are there for him, giving him moments of joy and connection. His sister does the same. It’s beautiful.
Most of all, I’m grateful for family, and for getting to be a dad. From birth, Trey was going to have this challenge. Getting to be there for him, fighting for him, is the most important, and rewarding, role of my life.
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Photos courtesy of author.
