It all started, or at least became apparent, when teachers noticed that Jasper Peterson seemed to be having vision problems.
That was back in 2015, when the western Weber County boy, born Chase Peterson but preferring the moniker Jasper, was in first grade. Problems persisted, defied easy explanation, and ultimately he was diagnosed with Batten disease, a rare disorder of the nervous system that typically claims its victims when they’re in their late teens or early 20s. Sight loss is usually the first symptom.
Fast forward, and things haven’t gotten easier. There’s no definitive cure, research into the disorder is limited in part because there are so few people who suffer from it and symptoms progressively broaden as Batten disease kids get older. Jasper, now 11, is one of just three patients in Utah that his mom, Jessica Peterson, knows of. “It’s every parent’s worst nightmare,” she said.
The COVID-19 pandemic seems to have complicated things, slowing the search for a cure and adding to the heartache. “There’s extreme helplessness. You just take it day by day,” Jessica said.
But still, you have to live, and five years on, as they keep clamoring for more research and awareness of Batten disease, it’s taught the Peterson family a lesson — you need to count your blessings. “There’s no doubt dealing with this disease has opened our eyes. It’s definitely made us better people,” Jessica said.
Call it the silver lining. Given the tough circumstances, the family could give in to despair, but Jessica said they instead keep the focus on the positive, even as Batten disease’s toll on Jasper mounts. He’s now legally blind, suffers from seizures, another symptom, and the disorder will typically cause a loss of motor functions as it progresses. But even if Jasper can’t do all the things he used to, like ride a bike, there are still good moments to be had.
“We choose to look at what we can still do and take advantage of that,” Jessica said.
Jasper loves the farmer/cowboy lifestyle and helps tend to an alfalfa field the family cultivates. He can still fish, hike and ride horses, if the proper precautions are taken.
“He still rides his horse. And we farm, so he rides his tractor,” said his dad, Matt Peterson. “He’s still active and does a lot of the things he likes to do.”
And even if Batten disease has impacted his cognitive development, there are things Jasper knows that might seem like a foreign language to others. He knows how engines and submersible pumps work. His penchant for farming has given him insights into things that may not register on the radar screens of others. “He can tell you anything about a tractor and how it works,” Jessica said.
Still, that doesn’t mean there aren’t dark, frustrating, sad moments. The Beyond Batten Disease Foundation, formed to raise awareness about the disorder and seek out research funding, notes that the ailment leads to loss of motor functions and Parkinson-like symptoms, eventually confining those who have it to wheelchairs or beds before premature death. Given such a prognosis, it’s the relatively low focus on research about Batten disease compared to other ailments given the smaller pool of patients that really gets to Jasper’s dad, among other things.
“It’s heartbreaking to see us get pushed to the back of the line,” Matt said.
And though they’re no longer seeking out donations for Batten disease research as aggressively as they were a couple of years ago, their message on the matter hasn’t changed. There’s an experimental gene therapy and three promising drug treatments that could potentially help, but the research always seems to face delay from the U.S. Food and Drug Administration and other regulators.
“It’s just trying to get it through the FDA,” said Matt. Sadly, treatments, if and when found, are less likely to benefit Batten disease victims as they get older and the disease progresses. And when there are clinical trials, only a very small number of kids with Batten disease can typically take part.
‘BIGGEST SMILE ON HIS FACE’
Despite it all, Jasper manages, even if there are moments of frustration. Jessica and Matt are real estate brokers and they’ll take turns working and staying home to care for Jasper.
“He functions quite well,” Jessica said. He and his younger brother Owen, now a first grader, had attended West Weber Elementary but are now being home-schooled given the COVID-19 pandemic. Jasper is learning Braille. “Physically, he looks really good for his age, but cognitively he’s behind,” Jessica said.
Significantly, though, he still has his dreams, which revolve around farming, ranching and the country lifestyle. The family acquired land in the Cornish area near the Idaho border to cultivate alfalfa to give Jasper an outlet for his passion, and when he makes a sale, his mom said, “he just gets the biggest smile on his face.”
Indeed, even if Batten disease has created an unanticipated twist in life — for Jasper, most notably, but the rest of his family as well — it doesn’t mean dreams have to wither away and die. “He wants to be a rancher. He wants to be a farmer. That’s all he wants to do,” Jessica said.