I’ve always known I wanted to be a Mom, though as I got older, I became more open to what that path might look like. After a sudden and unexpected pregnancy that ended in a heartbreaking miscarriage in 2023, I realized with absolute clarity that I had to try to have a child on my own or I would regret it for the rest of my life.

Being older meant my chances were shrinking quickly and after a visit to a fertility clinic they confirmed time was not on my side. I wasn’t in a relationship at the time of this revelation, which complicated things, but I found an anonymous donor who simply felt right, and with the support of an incredible village of family and friends, I decided to try. I needed to know I had done everything I could.

That “try” became my sweet boy, Everett.

My pregnancy with him was, in many ways, remarkably uneventful. Right up until it wasn’t. During delivery, I suffered a life-threatening hemorrhage due to undiagnosed placenta accreta and lost four liters of blood and had to have an emergency hysterectomy. I very nearly died bringing Everett into the world. And yet even with that terrifying start, nothing could have prepared me for the journey our lives were about to take.

Everett was a preemie, surprising us all arriving early, at 31 weeks, in September of 2024. What we believed would be a relatively straightforward NICU stay so he could learn to suck, swallow, and breathe turned into a long, winding, medically complex journey we never could have imagined. He spent 143 days in the NICU at Texas Children’s Hospital in Austin, fighting every day with a strength far beyond his tiny size and I never left him. I spent every day and night at his bedside throughout that entire stay.

When he finally came home in February 2025, he required a G-tube to eat, frequent suctioning to breathe, oxygen assistance, a pulse oximeter to monitor vitals, and constant oversight. Since we’ve been home he has faced significant upper-airway congestion and repeated episodes of respiratory distress, developmental delays, seizures, adrenal insufficiency, cerebral atrophy, and a subdural hematoma. He has a large team of specialists including Genetics, Neurology, Neurosurgery, Pulmonology, Gastroenterology, Endocrinology, ENT, Nephrology, Palliative Care as well as his Pediatrician, PT, OT and Speech Therapists (and he had a wonderful team of Neonatologists & nurses while in the NICU). He has had multiple ambulance transports and even a medical helicopter flight when he needed immediate help. Every step of his first year and a half has been marked by both fragility and resilience.

But the most devastating of his diagnosis is an ultra-rare neurodevelopmental mitochondrial genetic condition caused by a harmful change in the HK1 gene, which encodes the hexokinase 1 enzyme. This enzyme helps cells turn sugar into energy and plays a crucial role in the brain, eyes and skeletal muscle. In Everett’s case, his hexokinase enzyme is missing an “off switch”. Instead of turning on and off as needed, it runs at full speed constantly, disrupting other systems - especially his respiratory and neurological systems. Based on everything we know so far, his variant appears to be spontaneous and was not inherited. Everett has the most severe known variant. There are fewer than fifty known cases in the world.

The hardest truth is that this genetic condition carries a high mortality rate. About half of the children known with Everett’s specific variant have not made it to age eight. More than one doctor has told me it’s a good sign he made it to his first birthday. That gives me hope, but it also terrifies me that his life could be cut heartbreakingly short.

Everett’s geneticist, at Dell Children’s, told me about the To Cure a Rose Foundation and AlphaRose Therapeutics's Rare Lab team and the impact they are making on children with ultra-rare genetic conditions. They are based here in Austin and have taken on Everett’s case.

The Rare Labs team is actively working on what a treatment & cure could look like with gene therapy on his hexokinase enzyme, which is something that could change his prognosis entirely. This work is real, active, and incredibly promising, though not guaranteed. Advancing it requires significant and sustained funding. It is estimated to cost approximately $3 million to research and develop the cure.

I am a single Mom whose days and nights are centered around Everett’s care, appointments, therapies, hospitalizations, and constant monitoring. The financial strain of medical costs, research efforts, and living expenses has become significant. But I believe my time with him is where I am meant to be focusing my efforts. Finding a cure for Everett is my life’s purpose.

I am not one to ask for help. I pride myself on being fiercely independent but this isn’t about me. It’s about Everett and I am asking for support during this critical moment.

There are three ways you can financially support Everett and our journey to a cure:

Donate where 100% of the funds will be used for A Cure for Everett’s initiative and the research and development of a cure for Everett’s HK1 genetic condition. A Cure for Everett is currently operating under fiscal sponsorship of Rare Village Foundation, a 501(c)(3) nonprofit organization and your donation is tax-deductible within the guidelines of U.S. law.

Donate to Everett’s ongoing medical care, therapies, equipment, and travel for specialty care and basic living expenses..

Shop our merch store where the proceeds go towards Everett’s medical and living expenses.

If you are able to donate, fundraise, help amplify Everett’s story, or pray for us, it would mean more than I can express. Every contribution, of any kind, helps move us closer to answers, treatment, a cure and turns our hope into action.

Thank you for taking the time to read Everett’s story and for caring about our family. Your support is helping us change the trajectory of his life - and other kids who are like Everett.

With so much gratitude,

Marissa