BROCKPORT: What started as a sudden medical emergency has unfolded into a rare and complex diagnosis that has shaken a family — and united a community.
Over the past week, Cailyn and Jacob DeShong have been sharing emotional updates about their young son, Asher DeShong, who remains hospitalized and undergoing intensive neurological treatment after suffering seizures that led doctors to uncover a rare condition known as a Vein of Galen malformation.
A Rare And Dangerous Discovery
According to Jacob, Asher was ultimately diagnosed with what doctors call a Galen malformation — an abnormal tangle of blood vessels deep in the center of the brain.
“In short,” Jacob explained, “most of us are born with clusters of blood vessels in our brain that never really pose a problem. Asher has a cluster in the middle of his brain that is tangled and quite sizable.”
He described it in terms doctors shared with the family: imagine a main pipe with multiple secondary pipes branching off — pipes that aren’t supposed to be there. The plan, he said, is to gradually close off those secondary vessels over time through multiple treatments, because shutting them all down at once could cause dangerous complications.
Doctors told the family Asher’s heart had been working overtime for years — pumping extra blood to feed the abnormal vessel. Vein of Galen malformations are typically caught in utero or at birth. If missed, they often present early in life with severe disability, heart failure, or worse.
That is what makes Asher’s case even more extraordinary.
“The neuro doctors are dumbfounded,” Jacob wrote. “It’s rare enough to have this condition — even more rare for him to have lived completely normal up until this point.”
Neurology specialists believe Asher’s brain had been overcompensating for the malformation since birth, quietly adapting until something tipped the balance.
What Triggered It?
The family says doctors are now operating under the working theory that a recent gastrointestinal virus that moved through their household may have been the tipping point. Asher became dehydrated, which may have placed additional strain on his system and triggered seizures.
Infectious diseases — fungal, viral, and bacterial causes — have largely been ruled out.
Upon arrival at Children’s Hospital, Cailyn said there were “more questions than answers in the mystery that is Asher’s rare condition.”
He remains sedated and intubated as doctors stabilize his seizures and allow his brain to rest. His long-term neurological outlook will not be clear until he is out of sedation and able to undergo a thorough neurological exam.
“There’s still a long way to go,” Jacob shared. “Not a lot more about his overall physical and mental state will be known until he’s out of sedation.”
But there has been movement in the right direction.
“We went from hopeless to trending in the right direction,” he wrote.
The Procedures
Asher has already undergone a brain procedure, with more expected. Doctors plan to treat the malformation gradually through staged interventions.
The family has asked for continued prayers as another unexpected procedure was recently scheduled.
“It’s a lot to process ourselves first,” Cailyn wrote, “and then be able to let all those who love him know.”
An Army Behind Him
If there is one constant in this story, it is the overwhelming support surrounding this young boy.
Family members, friends, church groups, and community members gathered in prayer for Asher. His grandmother said it plainly: “He has an army behind him.”
Local businesses have stepped up as well.
Two Brothers Tees created “Team Asher” shirts to raise funds and awareness.
Soul Wellness DuBois introduced “Asher’s Drink” as a one-day fundraiser, with delivery options offered if enough interest was shown.
The community response, Jacob said, has been “nothing short of amazing and unbelievable.”
“It shows how much Asher is loved and missed,” he wrote. “Prayers are working as he is fighting as hard as he can.”
How To Help
For those wishing to support the DeShong family, verified fundraising links include:
FreeFunder Campaign:
https://www.freefunder.com/campaign/asher-deshong
(As of the latest update, more than $13,000 has been raised toward a $15,000 goal.)
Team Asher Shirts:
https://twobrotherstees.myshopify.com
(Search “Team Asher Fundraiser”)
Community members are also encouraged to watch local business pages for additional fundraiser announcements.
The Road Ahead
Doctors have cautioned the family that recovery will be slow. But slow, they’ve said, is often better.
“The slower and steadier the better,” Cailyn shared.
For now, Asher remains sedated while his medical team works carefully to reduce seizure activity and stabilize his condition.
And as one of the images shared by his mother reads:
“Rattle the stars, Asher.”
If your organization wishes to enlist in this makeshift army. . . or already has, message us or e-mail us (
