A Girl Named Outlaw

Olivia and Mom

I can still hear the faint beeping of the monitors attached to my daughter and how cold the room felt. 

When I close my eyes I can still see Olivia’s partially dressed body unconscious and feverish, as I shivered beneath my own sweater. 

“Mrs. Outlaw?” I can remember my head turning toward the door to see a woman with kind eyes and an embroidered physician's lapel lead me toward where my husband sat at the corner of the room; he with swollen eyes, hands clasped. 

Olivia, our two year old, had coded the night before as we’d wheeled her into an emergency room for the seizure activity she’d been experiencing earlier that day. 

Within twenty-four hours, they’d performed a litany of interventions to stabilize her and were running a succession of tests to find a diagnosis, which included a spinal tap, CT scans, MRI, and EEG’s. 

The physician introduced herself with careful and kind bedside manner. 

She told us that she’d been one of the neurologists assigned to Olivia’s case. 

My husband and I leaned forward, hopeful. 

“I’m so sorry Mr. and Mrs. Outlaw.” 

Keith’s eyes met mine. 

This is where I felt myself go numb. 

The neurologist would go on to mention that there was evidence of breakdown in Olivia’s brain.  Brain damage. 

The physician also described to us that the eye-of-the-tiger impression within Olivia’s brain suggested that the damage was progressive, perhaps mitochondrial, and indicatively terminal. 

“We had a round table this morning with our team of neurologists,” she explained, “ and we’ve only seen about ten images in the world that look like Olivia’s. I’m so sorry.” 

A few weeks later we got a phone call that would diagnose my daughter with an advancing stage of BPAN, beta-propeller-protein-associated-neurodegeneration, a mutation in Olivia’s genome that would eventually lead to her death. Olivia would die three years later. 

We came to hear of Project 4031 in the summer of 2022, six weeks before Olivia would take her last breath. By this time, we’d enrolled our five-year-old in at home hospice, and that’s where (at the intake evaluation) a kind social worker asked about our financial situation. 

I remember responding, “It’s been really hard.” 

My husband, at the time, was fully employed and in the habit of working overtime to pay for 

never-ending medical bills, but he, also at the time, had incurred a severe injury and was at home awaiting surgery. The overtime had run dry. 

Parenting a highly special needs child comes at many costs. 

We’d found ourselves, like many Americans do, in a financial gap with bills piling up and medical equipment being purchased on credit cards. Our daughter’s medical bed alone had cost our family $10,000. 

“I know of an organization…” she began. 

I shook my head wearily, “We don’t qualify.” 

The social worker looked surprised. 

I went on to explain to her how I’d applied to organization after organization for things that Olivia had needed, from her bed to her bath chair…only to wait months and ultimately be denied. Knowing the end was near, I’d given up. 

I remember our social worker, not only listening to us, but really seeing us, 

seeing our need, seeing our despair, seeing the physical sacrifice of the weeks my husband had spent away from his dying daughter just to make the financial ends-meet. 

She was so gentle with us. 

“There’s this one organization…” she explained, “I think they can help you so that you can spend more time with Olivia in these final days. I’d like to apply on your behalf. 

You don’t have to do anything but give me permission.” 

It all felt too good to be true, and I think my response was to shrug it off. 

About a week later I got an email that our mortgage had been cleared for the month by the same organization. 

I remember reading the balance, whispering, “...my God…” and ultimately sobbing tears of relief. I couldn’t believe that an organization that’d never met me or Olivia could care enough 

about our situation to step in so generously in that last hour, but that’s Project 4031. 

This might sound like a tale of finances, but I assure it’s so much more. 

Project 4031 showed us the non-judgemental, and generous love of God in the darkest hours of our lives. 

We immediately went from wondering how we’d pay for our daughter’s funeral, to spending every moment we could with her being physically present, and making invaluable memories. 

Project 4031 gave us time. 

Olivia and Dad

Since Olivia’s death, we in turn have become Sparrow partners, and though Project 4031 has never asked us for a dime, I tear up thinking about the mom or dad on the other side of my donation, because I was that mom. 

On the heels of Mother’s Day, 

I want to sincerely thank the men and women behind this powerful organization, 

along with each and every volunteer, and donor. 

Thank you. 

Thank you. 

Thank you for giving me respite from my advocacy. 

Thank you for giving my husband more time with his daughter. 

And thank you for allowing me to simply be Olivia’s mom. 

We are eternally grateful for the community we have found in you.