Marking every mile

It’s one of the first warm days in February, so Jake Hall and his son Thad are going for a run. Their big gray van pulls into the parking lot of West Virginia’s C&O Canal Trail—their favorite route—as the late-afternoon sun slants through leafless trees. Jake, sporting a long beard and yellow tank top, hops out of the van and opens the sliding door. Eleven-year-old Thad sits quietly inside in his big, black wheelchair.

While Thad waits, Jake pulls out the frame of another wheelchair—this one long, low, and bright red with “Hoyt Racing” printed in white letters above its big wheels. Moving with practiced efficiency, Jake screws the wheels onto the frame, then climbs into the van and lifts Thad into his arms. He settles his son gently into the racing wheelchair and straps him in, ­placing cushions around his small body.

Thad’s eyes and hands—his primary modes of communication—are closed and still. His head leans back on a cushion covered with a bright dog print while his dad loads up bags of emergency medical equipment. In the golden light, Thad seems almost asleep. But as his dad wheels him onto the trail and starts off at a brisk jog, Thad opens his eyes. Clearly excited, he waves his hands in the breeze.

One year ago, Thad was released from the hospital after 50 days in pediatric intensive care. An intense bout of pneumonia had nearly collapsed his lungs. Several times, Jake thought his son might die. Thad pulled through, but he now has to breathe through a tracheotomy tube in his neck. Today, they’re back on the trail—with an extra bag of equipment in case the tube comes out.

Pushing the combined weight of Thad, his medical equipment, and the wheelchair—about 120 pounds—is a challenge, but to Jake it’s not a burden. He treasures the time spent with his son—facing challenges together, pushing and being pushed through mile after mile. Every step is a reminder of the race set before them both.

“I just love watching him experience it … he’s taught me to enjoy every moment,” Jake said. “None of it’s guaranteed.”

Thad has a rare disease called Jamuar syndrome, caused by genetically inherited recessive mutations in the UGDH enzyme. According to Jason Tresser, program chair of biological sciences at Biola University, UGDH is present in all the cells of the body and helps form the extracellular matrix, a coating that surrounds body cells and tissues. Each type of tissue has a unique coating that allows cells “to move along each other, to properly form and develop, and to recognize what tissue they are,” Tresser said. UGDH mutations can cause ­problems with the extracellular matrix, especially in the brain—leaving cells unable to recognize each other and perform properly.

In Thad’s case, the mutations cause epileptic encephalopathy. That means he has frequent seizures, hypotonia (loss of muscle tone), and developmental delays. He will never talk or walk on his own. Even breathing is a challenge. But he didn’t have an official diagnosis until 2019. First came years of tests and medical dead ends, as his family tried to come to terms with his condition.

THAD WAS BORN in March 2011, two years after the Halls’ first child, Magnolia. He was weak, but doctors weren’t sure why. He cleared all the tests, but a few months later he began having seizures. Each seizure made him weaker. By the time Thad was 8 months old, he could no longer cry or eat and could hardly move. He was having 15 to 20 seizure episodes per day, each lasting for several minutes. Medication didn’t help. Doctors inserted a feeding tube, but they could only diagnose him with “failure to thrive” and “intractable epilepsy.”

Jake says the weariness and helplessness of those early days took a deep emotional toll. He’d been a committed Christian for years, but at first he felt like he was living two disconnected realities: one with a kind, powerful, and real Jesus; the other with a suffering son and no clear answers. He avoided reading the Gospels. All the stories of healing hurt too much, especially the one about the boy with epilepsy.

“Jesus heals him, and … I’m like, I know You can do it, God. Why don’t You do it? I do not understand how this could possibly be good,” Jake recalled. “If one more person quoted Romans 8:28 to me, I was gonna throttle them.”

One thing that did help was a John Piper sermon about the man born blind. Piper originally delivered it in May 2011, only months after Thad’s birth. Jake listened to the sermon over and over. Piper didn’t avoid the story’s inherent suffering. He talked about a parent’s grief and helplessness. He talked about the struggle to understand. And he talked about purpose.

“If God foresees and permits a conception that he knows will produce blindness, he has reasons for this permission. … God never has met a child for whom He had no plan,” Piper said.

It was hard—it still is hard—to accept that God planned for Thad to live in a broken body. But Piper’s point, in Jake’s own words, was that “everyone is looking for cause, but Jesus is pointing them to purpose. And so as I’m ­trying to find the cause, God is doing a thousand different things.”

IN 2017, WHEN THAD was 4, Jake and his wife Rebekah learned they both were carriers of recessive UGDH mutations. They decided not to have more children due to the risk of passing it on. In 2019, they finally learned about a study by Singaporean doctor Saumya Jamuar and others that officially linked the mutations to Thad’s condition. The study also identified 36 other children worldwide who had the condition and gave it a name—Jamuar syndrome.

While navigating Thad’s complex medical issues, the Halls worked out some solutions. Thad is very susceptible to pneumonia in cold weather, so they use a vibrating vest developed for cystic fibrosis patients, a cough assist machine, and a suction system to help clear his lungs. He sleeps connected to a ventilator and pulse oximeter. Several nights a week, a caretaker stays over to help him with nighttime seizures and breathing difficulties.

But Thad’s life is full of much more than medical procedures. His family has learned to watch his eyes and hands, look for tension or relaxation in his face and body, and understand his moods. Lights and balloons fascinate him, so the Halls often leave up their Christmas lights and tie bunches of helium balloons to his wheelchair. He likes watching bubbling fish tanks and—like most 11-year-old boys—basketball. But his favorite thing, according to his older sister Meg, is running with his dad.

“He always looks so chipper when they get back,” she said.

JAKE HAS BEEN RUNNING for fun and exercise since high school. After Thad’s birth, running became an escape, a way to clear his head. But in 2016, when Thad’s grandparents gave the Halls a jog stroller for Thad’s fifth birthday, Jake decided to start bringing Thad along. At first, they only covered gentle distances—2 miles or so. He thought about running races with Thad, but most didn’t allow strollers.

But one of Jake’s friends knew the organizers of the Harpers Ferry Half Marathon, and in May 2016, he offered at the last minute to get them a spot. The race was the following day, and Jake had never run more than 8 miles. He said yes anyway.

On race day, Thad woke up calm and alert—no seizures. Jake struggled through the race, crumpling briefly at mile 10 with severe leg cramps. But that day remains one of his favorite memories.

“That moment of finishing that race was just this unbelievable joy,” he said. “I let out a big yell, and then we kind of glided through, and they handed us our little medals.”

Jake put one of the medals around Thad’s neck. “I’m proud of you,” he told his son.

“In my mind, Thaddeus was completing a half marathon,” he said.

That race opened a world of new possibilities. Since 2016, Jake and Thad have run hundreds of miles together. When Thad grew out of the jog stroller, friends helped them raise money for the Hoyt racing wheelchair. As Thad gets older and heavier, running with him will get harder—but Jake is planning on plenty more runs with his son. “My goal is to be fit enough to be able to run with Thad as long as I can. … I’d like to be running until I’m at least 70,” he said.

Since that long hospital stay last year, every run fills Jake with gratitude.

“We really thought it was the end of the road … sometimes it’s overwhelming.” Then he chuckles: “It’s OK to cry while you run. It’s hard, but you can do it.”