It is with great sadness that we announce the passing of Wyatt Zmrzel, son of our Board Member Diane Love, who was tragically killed in a car accident just days after Christmas. Wyatt had AMN and suffered from epileptic seizures but he never let either of those things hold him back from doing the things that he loved. He was a truly remarkable young man who persevered through his medical setbacks and lived his life to the fullest. Our thoughts and prayers are with Wyatt’s family and friends during this time of immense grief and sadness.
The Myelin Project will be establishing a fund in memory of Wyatt in the near future. Details TBD. If you would like to make a charitable contribution to The Myelin Project in memory of Wyatt, please click here.
The following article was written by Ellen Garrison of the Sacramento Bee on January 22nd, 2018:
It was just after Christmas, and they had just gotten matching ram tattoos to celebrate their mutual love of ink and a successful hunting trip. Wyatt Zmrzel and his uncle Joe Doub Jr. were heading back to Loomis from a Sacramento tattoo parlor in a Lyft rideshare vehicle on the night of Dec. 27. Zmrzel, 22, came to rely on car services because he suffered seizures and struggled to use the right side of his body due to a rare genetic condition called adrenoleukodystrophy, or ALD.
“I thought it was a blessing because if he were born in a different generation, he wouldn’t have been able to go wherever he wanted,” said his mother, Diane Love.
But Zmrzel and his uncle never made it home to Loomis that night. Around 10:30 p.m., their Lyft driver pulled onto Highway 99 at a rural intersection straight into the path of a Toyota 4Runner in Sutter County, about 13 miles north of Natomas. Zmrzel died at the scene. Doub, 52, remained hospitalized in a coma last week. Zmrzel’s death was a sudden end to a life lived as if each day could be his last, Love said. An avid gymnast and hunter, Zmrzel had fought seizures brought on by ALD all his life.
He was diagnosed when he was 7, she said. The childhood form of the disease can be fatal, but Zmrzel didn’t start exhibiting symptoms beyond seizures and darkened skin until he was 20. Around that time, it seemed like he might have had a stroke – he started having trouble with the right side of his body. First his knee, then his ankle and eventually his hand and arm. There isn’t a cure, but he and his father traveled regularly to Mexico to try an an experimental stem cell treatment that halted the progression of the disease.
“He always felt like he was getting better,” his father, Bill Zmrzel, said. “He had a lot of belief in those stem cells.” Wyatt Zmrzel asked about his prognosis when he first started showing signs of the disease.
“I had to tell him we don’t know what to expect,” Love said. “There’s no way to know … It’s partly why he lived his life big.”
Shortly after Wyatt’s diagnosis at age 7, she and Bill Zmrzel started the Cure ALD Foundation dedicated to finding a cure for the progressive disease. About one in every 17,000 babies is born with the disorder and it occurs most commonly in men, according to the Myelin Project, a group advocating for a cure. Symptoms vary widely by patient and don’t appear before age 3 at the earliest. Boys and men with ALD can have walking and balance problems, pain or numbness in the legs, difficulty with focus and reading comprehension, or vision problems. Seizures are a relatively rare symptom.
Zmrzel didn’t let the disorder slow him down – despite his seizures, he became a competitive gymnast, joining a club team at the University of Washington in Seattle while he attended a trade school in the area. After exhibiting symptoms in his 20s, he had to adapt to some of his favorite activities. He loved to hunt and taught himself to use a bow and arrow with his left hand and his teeth.
“Wyatt – he just adapted to whatever it was,” said Bill Zmrzel. “He never looked at himself as having a big disability.”
He and his uncle, Doub, decided to get ram tattoos for two reasons, Love said – they had just completed a ram hunt in Texas and Zmrzel’s sister, Sydney, is a cheerleader for the Los Angeles Rams. Bill Zmrzel was with the two of them in the tattoo shop before heading home that night.
“They were just on a cloud,” he said. “They loved it.”
It is unclear why their Lyft driver, Rafiullah Amiri, 29, pulled onto Highway 99 as the 4Runner approached. CHP investigators don’t believe alcohol or drugs were involved. Amiri sustained serious injuries, according to a CHP accident report. A passenger in the 4Runner also sustained major injuries. Lyft issued a statement in response to questions about the incident: “We’re incredibly saddened by this incident and our thoughts are with those impacted. We stand ready to assist in any way that we can.”
Hundreds attended a memorial service for Zmrzel on Jan. 5, including some of his elementary school teachers. “It was just so sweet – you just don’t see that very often,” Love said. “A lot of people cared for him because he did have seizures.” Zmrzel lived life to the fullest, Love said.
“He could have had no disease and believed he was going to live to be 80 and have (the accident) happen,” Love said. “You just don’t know.”