Everett is a brave little boy living in Austin, Texas, with an ultra-rare neurodevelopmental mitochondrial genetic condition caused by a harmful, spontaneous change in his HK1 gene. Fewer than 50 cases are known worldwide, there is no cure (yet!), and the condition carries a frighteningly high mortality rate. You can read more about Everett's story and the mission his family is on to fund a cure at acureforeverett.org

I established this fund to help support his superhero mom, Marissa Blomstrom, with Everett's ongoing medical care, therapies, equipment, travel for specialty care and life expenses.

Here's why...

I've known Marissa since 2000 when we became instant best friends at the University of Wisconsin-Madison. From the moment I met her, I knew she was extraordinary. Marissa does everything BIG - she turns every day moments into something special and is the ultimate memory maker. Her heart knows no bounds and she has showed up for me, and ALL of her friends, time and time again.

As she brought Everett into the world, Marissa suffered a life-threatening hemorrhage due to undiagnosed placenta accreta, lost four liters of blood and had to have an emergency hysterectomy - being at her bedside in the hospital the morning after she delivered Everett was one of the most terrifying days of my life.

But I have watched in awe as she has fought relentlessly for Everett - through 143 days together in the NICU to their fragile time at home, punctuated by many trips back to the hospital.

As a single mom, her life is centered around Everett’s care, appointments, therapies, hospitalizations and constant monitoring. Everett has large team of specialists that Marissa juggles including Genetics, Neurology, Neurosurgery, Pulmonology, Gastroenterology, Endocrinology, ENT, Nephrology, Palliative Care as well as his Pediatrician, PT, OT and Speech Therapists. I've witnessed firsthand on several visits to Austin how every moment of Marissa's day (and night!) is dedicated solely to caring for Everett. The financial strain of medical costs, bespoke equipment and living expenses is significant.

Marissa is fiercely independent - asking for help does not come easy for her, but she needs her village now more than ever.

*This is to support the Blomstrom family with their expenses (so your donation is not tax deductible). You can also show up for them in other very important ways: