Over 200 gathered at Crosslin Park Saturday morning to run, walk or just cheer from the shady sidelines, at the 7th annual Race 4 Jase fundraiser.
Jessy Dershem organizes the event every year to raise awareness of — and fund research for — galactosemia, a rare disorder affecting her son.
The rarity of Jase Dershem’s disorder means there isn’t much money set aside to discover treatments for it, his mother said, and so there aren’t any.
Only one child in 30,000 to 60,000 is born with galactosemia, according to the National Institutes of Health.
The genetic disorder leaves the body unable to break down a type of simple sugar called galactose. It is present in many types of food, but the human body also produces galactose on its own.
If not detected early, the disease often is fatal.
Jase was diagnosed with galactosemia at six days old, by which point his kidneys had failed, his liver had failed, and he was suffering from sepsis.
“As a new mother, when your child is not thriving, not doing well, it’s the worst feeling in the world,” Dershem said.
She had no idea why until results from the state-mandated newborn screening test arrived with the answer, galactosemia. Without the proper enzyme, milk had essentially been poison to Jase, she said.
For much of his 8 and a half years, doctors didn’t have much to offer besides dietary advice, lists of what to eat, what not to eat, what to eat only in moderation.
“For us, that’s not good enough,” Dershem said. Her son has complications from the disease — delays in growth, and in motor skills. He has trouble with speech and with memory. There are abnormalities in the white matter of his brain, she said, causing damage, “poking holes” in the tissue.
He receives six days of speech therapy a week during the school year, five at Chisholm Public Schools and one at Hedges Regional Speech and Hearing.
“With his intensive therapy that he does, it helps him keep progressing and combating the damage that his body is doing to itself,” she said.
Next fall he enters the third grade. She worries about his future, beyond elementary school, past middle and high school, and further on and on.
“Right now, it’s like as he gets older, more and more side effects are just popping up,” she said.
Last week they visited with Jase’s neurologist, as his tremors were growing more intense.
“All the time because of the side effects of the glactose building up in his body, he keeps having new issues and we have to go see a different doctor.”
She wants better solutions for him than diet and hard work and patience.
Better solutions might be close.
“When we first started this race, there were no doctors looking at medications,” she said. “Luckily, this year, I have three different doctors to choose from.” One at Utah State University, one at Boston Children’s Hospital, another with a pharmaceutical company named Applied Therapeutics.
As soon as the race ended, she would go meet with Jase’s geneticist, she said. They would discuss which of the three doctors’ work holds the most promise for Jase, and to which the $7,500 raised Saturday should go.
Since the very first Race 4 Jase, $55,000 has been raised, she said, not including the latest figure.
Progress toward a galactosemia treatment has “come so far,” she said. “I’d like to think we were a small part of that, because of what we’ve contributed to the research.”
“We’re hoping in the next 5 years of life, that Jase will have a medication he can take,” Dershem said. “Along with his restricted diet and a medication, he won’t have all the side effects ... he will have a better quality of life when he gets older.”
But until there is a treatment available for Jase, she’s going to keep the race going, she said.
To “breathe new life” into the 7th iteration, a Firefighter Walk was added to the roster alongside the 5K, the mile-long fun run, and mile walk.
Various departments have shown up to support the cause in years past, but now that there’s an official event for the first responders, participation was up.
Firefighters from Enid, Garber, Meno, and Woodring all showed, marching a mile in full gear.
Supporters of all stripe made up the 200-plus crowd.
Kathy Chambers, Jase’s speech therapist from Hedges, was sure to make it. The Enid High School track and cross country team attended. There were friends, friends of friends, acquaintances and strangers.
Mic in hand, Dershem expressed her thanks.
“(It’s been) seven years, and I always feel like no one is going to show up,” she said. “But you always do.”