The fair isn’t for another seven months, but the Schonbachler family still found a reason to celebrate at the Morrow County Fairgrounds in Heppner Saturday.
After spending the early afternoon going on a scavenger hunt that hit Heppner highlights like Murray’s Drug and the Heppner Public Library, 5-year-old Asher Schonbachler arrived to the fairgrounds for one more surprise.
As Asher’s parents Eric and Rachel led him around the corner, 50 of Asher’s closest friends and relatives, many of them wearing “Asher’s Army” T-shirts, parted to reveal a custom-made trailer.
The trailer featured a special paint job that depicted Asher’s favorite character — Spider-Man. The inside of the trailer doors featured a web with strands that spelled out Asher’s name.
And alongside the bed with the Spider-Man bedspread and all the Spider-Man-themed toys and books was a shovel to aid in one of Asher’s favorite activities — digging.
True to form, Asher grasped a tiny yellow shovel as he clambered into the trailer to explore its contents. Soon enough, all the party’s children were inside to poke and prod around Asher’s newest gift.
Before going inside for cake and ice cream, Asher’s parents led him back to the trailer for a family photo.
He tripped and fell on his way, leading to some crying and a little surliness, but as soon as his two sisters started giggling, he cracked a smile long enough to satisfy the photographers.
“His face shows it all,” Eric said about Asher’s reaction to the ttrailer.
It was a bittersweet moment for the Schonbachlers because the gift wasn’t for his birthday or some milestone.
The trailer had been bestowed as a special gift from Make-A-Wish Oregon to Asher, who has a rare genetic disorder that will likely shorten his lifespan.
Eric and Rachel first grew concerned when Asher was showing a lot of “instability” when he started walking, meaning his gait trembled frequently.
They got the diagnosis in 2016: 4H leukodystrophy.
Leukodystrophy is a series of genetic disorder that affect the white matter that surrounds the nerve cells in the brain and spinal cord and expedites messages between cells. The disorder is rare and parents often pass it to their children without exhibiting it themselves.
The version that afflicts Asher leads to a variety of symptoms that can include problems with walking and balance, tremors, learning disabilities, and speech problems.
There is no known cure and only hundreds of people are known to have the disorder.
Once the community found out about Asher’s condition, the Heppner Elks Lodge held a fundraiser that was popular enough that some people were turned away at the door.
The event raised $35,000, which the Schonbachlers turned around and donated to 4H research.
The years that have followed Asher’s diagnosis have been filled with traveling for the family: a trip to Canada to visit a 4H researcher, a trip to Minneapolis for a 4H conference, and many trips to Portland for doctor’s appointments. Whenever they visit a new health professional, it’s usually the first time they’ve seen 4H in person.
On one of Asher’s doctor visits, the physician recommended the family get in touch with Make-A-Wish Oregon.
Eric and Rachel said Asher loved camping, but his condition meant he often gets overheated or too cold based on the outdoor temperature.
In order to enjoy camping, Asher would need a space with a temperate climate that could be transported wherever he went.
A chapter for the national foundation that arranges experiences and gifts for children with critical illnesses around the country, Make-A-Wish Oregon granted the Schonbachlers’ request and connected them with two volunteers from Ione.
In the meantime, the nonprofit ordered the custom trailer from Wee Roll, a Florida-based manufacturer.
Originally slated for completion over the summer, Wee Roll moved the order to the front of the line in honor of Asher’s wish.
With so much unknown about 4H, no one knows how long Asher will live. A Washington Post article about the disorder said some patients can live into their teens or 20s.
However long he has left, Asher’s parents are focused on making his remaining time special.
And Eric predicted that Asher wouldn’t wait until their next camping trip to make use of his wish.
“Somebody’s is going to sleepin’ there tonight,” he said.
For more information on Asher’s condition, Rachel suggested people visit the website for The Yaya Foundation for 4H Leukodystrophy at www.yayafoundation4hl.org.