Doubletake: In the running

LES SILLARS, HOST: From WORLD Radio, this is Doubletake. I’m Les Sillars.

Before we get started on this week’s Doubletake, we have a correction from Episode 6, “The Death Doula”: The virus that causes AIDS is spread most commonly through sex. HIV can be spread through infected blood, but infection as a result of blood transfusion is very rare.

OK. On with the show.

When I was in college I got a call from my girlfriend. She was in Saskatchewan attending the Bible college where we’d met the year before. I was in Edmonton, finishing my first year at the University of Alberta.

And, well, she broke up with me over the phone. Said we were going in different directions.

MUSIC: Guess Who

I found that confusing. Because I’d just told her the week before that in the fall I was coming back to Bible college. Back to where she was. The disappointment was keen. I did go back to that Bible college. She didn’t. And that fall I met the wonderful and lovely young lady who is now my wife. But that summer I struggled to see why I had to go through that. I’d wanted something. A lot. And I was left with crushed expectations and what seemed to be an uncertain future.

I suspect that almost everybody has at least one similar experience. You want something good. Like a good job. An attractive and loving husband or wife. Healthy kids. It seems to be in reach. And then you get a phone call. Or your child is born and the room goes silent. Something’s wrong, and it seems like life will never look the same.

What do you do then? What does life look like? What do you lose—and what do you gain? WORLD reporter Elizabeth Russell met someone whose life changed like that. His name is Jake Hall. And she met his son Thad, the person who changed it.

JAKE HALL: All right, Thad. Let’s head outside.

ELIZABETH RUSSELL: It’s one of the first warm days in February, a breezy 55 degrees. Jake Hall and his son Thad are going for a run. Outside the big gray van parked in their driveway, Jake stops to make sure they have everything.

JAKE: All right. So we’ve got suction, blankets, ah…what else? Food, go bag, water bottles, obviously your chair, and…I think we’re all set, man.

It’s time to get Thad in the van. Jake turns on the wheelchair lift.

JAKE: All right. Let’s buckle up. All right! You ready, man? You’ve been kind of sleepy today. It’s warm outside. Does that make you feel sleepy?...Okay. We are good to go.

About 20 minutes later, the van pulls into the parking lot of West Virginia’s C&O Canal Trail. Late-afternoon sun slants through the leafless trees. This trail is their favorite. 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. It’s bright red, long and low, with “Hoyt Racing” printed in white letters above its big wheels. Jake screws the wheels onto the frame. Then he 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. His hands wave excitedly in the breeze.

They’ve run this trail hundreds of times. But today is special. To understand why, we have to go back to something Jake said in the car on the way over.

JAKE: It’s been exactly one year—one year ago yesterday that Thaddeus came home from the longest hospital stay he’s ever had. It was about a month and a half, and there were two points we really thought we were going to lose him. We really thought it was the end of the road. And thankfully it was not. But it was really scary.

Thad got pneumonia and went to the ICU in December 2021. And he didn’t come home until February 2022—over a year ago. His lungs filled with fluid and nearly collapsed. Now, he has to breathe through a tracheostomy tube in his neck. Cleaning and protecting that tube can get complicated. But that’s not what Jake is focusing on.

JAKE: So anyway, today is wonderful, it’s warm out, we’re healthy, Thad’s not in the hospital, we get to celebrate that by going out on a run!

Today, they’re back on the trail—with an extra bag of equipment in case the tube comes out.

MUSIC: Empty Heart

JAKE: When Thaddeus was born, the room was silent. And the nurses were kind of huddled, they were giving him oxygen. There was just something a little bit not right.

Thad has a rare disease called Jamuar syndrome. It’s caused by genetically inherited recessive mutations in the UGDH enzyme.

JASON TRESSER: UGDH is an enzyme that’s in all the cells of the body. And it’s involved in this process of making what’s called the extracellular matrix.

Jason Tresser is the program chair of biological sciences at Biola University. He told me that the extracellular matrix is a coating that surrounds body cells and tissues. Each type of tissue has a unique coating.

JASON TRESSER: And it’s what allows the cells to recognize each other, to move along each other, to properly form in development, and to recognize what tissue they are. So it’s really important for cells to make this proper outer coating.

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 (which is 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.

Thad was born in March 2011, two years after the Halls’ first child, Meg. 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.”

In 2017, when Thad was 4, the Halls learned that he had two recessive UGDH mutations. But no one really knew what that meant.

JAKE HALL: So they said, that's the only thing we see, there’s no research on this. There’s no documentation on this, we’re basically going to keep this on file. And if there ever is some research that’s done, we’ll let you know.

It wasn’t until 2019 that the Halls heard about a study that officially linked the mutations to Thad’s condition.

CNA NEWS: A medical team in Singapore has identified the world’s first known case of a new condition known as Jamuar Syndrome. Caused by a genetic disorder, the previously undiagnosed condition is named after the doctor who first came across the illness at KK Women’s and Children’s Hospital.

Singaporean doctor Saumya Jamuar and others identified 36 other children worldwide who had the condition and gave it a name. Jamuar syndrome.

What’s it like to live with a medically fragile child? I think one of Jake’s favorite songs can help us understand.

Words from verse 3 of “Oh, Love That Will Not Let Me Go” are tattooed on his arm—right below the silhouette of a person rising and running from his wheelchair.

“Oh, Love That Will Not Let Me Go” by Robbie Seay Band: [LYRIC] Oh, joy that seeks me through the pain, I cannot close my heart to Thee. I trace the rainbow through the rain, and feel the promise is not vain that morn shall tearless be.

“I trace the rainbow through the rain.” There sure are rainbows, and we’ll get to those. But first, let’s talk about the rain.

In 2017, when the Halls learned about Thad’s mutations, they also learned something else. Both Jake and his wife Rebekah were carriers of those UGDH mutations. They had to make a hard decision.

Bert Turner is Rebekah’s dad and Thad’s grandfather.

BERT TURNER: When we do, I guess a wedding shower ’round here, there’s something about if you break the ribbon, every time you break the ribbon, that means a child or something like that. And so Rebekah broke every ribbon that she had.

Bert told me Rebekah always wanted to have a big family. But the risk of passing on the mutations to another child was high.

JAKE: There’s just the odds of having that happen, the kind of one in four chance, basically.

So Jake and Rebekah decided not to have more children. That was difficult. And they hadn’t anticipated the responsibility of caring for Thad.

MUSIC: Finding Beauty

JAKE: Certainly feel like a team. But it’s a lot more like, tag-team relay race than, you know, doing the same tasks together. So, you know, we, we take turns, you know, who’s, who’s getting up in the night, who’s doing his breathing treatments, who's going to that doctor’s appointment?

It’s a full-time job, split between them.

JAKE: There’s a lot of divide and conquer that, that goes on. One challenge with that is the care that he needs, and the diminishing number of individuals who can care for him without our assistance, it’s very difficult for us to get away and have a date night, or, you know, our anniversary comes around and we want to go take a night or two out somewhere, like that’s super hard to pull off. So that, that’s been, I think, the biggest challenge for our marriage.

Thad eats through a feeding tube. He sleeps connected to a ventilator and pulse oximeter. A nurse stays over several nights a week to help with his nighttime seizures. But when she’s not there, Jake and his wife sleep with one ear open, listening for the beeping sound that will tell them their son needs help breathing.

JAKE: So anytime that, you know, there are set limits of his oxygen level and his heartbeat, and whenever those drop too low, that will also go off. Or if he moves his toe too much, it will go off.

An emergency could develop at any moment. Thad’s long hospital stay started when he got mildly congested while on a run with his dad. By the time they got home, 20 minutes later, he was in critical condition.

You know how your throat gets this cold, clogged-up feeling if you run in cold weather? That’s kind of how Thad feels all the time. He can’t cough on his own to clear his airway. The Halls have worked out some solutions over the years. They use a vibrating vest, originally developed for cystic fibrosis patients. A cough assist machine. And a suction system to help clear his lungs.

Jake also avoids running with Thad when it’s cold outside. And every time they go someplace or invite friends over, the Halls have to decide if it’s worth exposing Thad to a possible illness. Decisions they make for Thad affect the whole family. Here’s his big sister, Meg. She’s 13.

MEG HALL: Sometimes we would just avoid going places, so no one got sick. And whereas sometimes I was kind of miffed, I feel like, it’s not necessarily a bad thing, to be able to stay at home, because then you can spend time with your family. And it’s not a bad thing to not get sick either.

When the Halls do decide to take Thad somewhere, they also have to make sure it’s wheelchair accessible. The first time they visited their current church, they got stuck.

JAKE: And we find ourselves at the end of this hallway with three stairs between us and a sloped floor auditorium. And that’s not cool with a wheelchair. So there were a few individuals who was like, “Oh, can we help you carry the chair down?” “Oh, there’s this side exit door. Let me open that, walk around the building and come in that way.” So once we kind of got into a rhythm, they knew, all right, keep that door propped open because the Halls are going to use it.

MUSIC: Mysterious Horizon

When Jake talks about all these things now, he sounds pretty matter-of-fact. But the early days of Thad’s medical struggles took a deep emotional toll on Jake. He’d been a committed Christian for years. But 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. There were too many stories of miraculous healing.

JAKE: There’s a man, he’s got an epileptic son, he’s like, he often falls into the fire and into the water. And, you know, Jesus heals him, like, those stories just hurt to read, because 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.’ And if one more person quoted Romans 8:28 to me, I was gonna throttle them, like, it was just not helpful.

One thing that did help was a John Piper sermon about the man born blind.

JOHN PIPER: Okay, here we are. And this text begins with Jesus seeing a man born blind. Verse 1: “As He passed by, he saw a man blind from birth.”

Piper originally delivered the sermon 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.

PIPER: Everything is irrevocably changed. And nobody asked you or got your permission. It’s not what you bargained for when you got married or had a baby.

But Piper also talked about purpose.

PIPER: Verse 3, again. ‘It was not that this man sinned, or his parents,’ now here comes his answer, ‘but that the works of God might be displayed in him.’ So the explanation lies not in past causes but in future purposes.

This is God. God doesn’t do things willy-nilly. If God permits this union, knowing it will produce blindness, whether you use the word permit or cause, it’s purposeful. It’s purposeful. ‘I am going to let it happen because I have a design. I have a plan. I have a purpose for this life.’

MUSIC: Turning Point

It was hard—it still is hard—to accept that God planned for Thad to live in a broken body. But that sermon gave Jake a new perspective.

JAKE: Thaddeus has a lot in common with that man born blind. And I have a lot in common with the dad of that man born blind. And to know this is not, you know, there, see, as John Piper put it, 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. And I might be aware of 10 of them, maybe.

Piper’s sermon juxtaposes the blind man’s condition and healing with Jesus’ statement just a few verses earlier, “I, am the light.” I asked Jake what he thinks Jesus would say to Thad—sitting there in a wheelchair, quiet, still, nonverbal.

JAKE: “I understand.” Like, there’s this. He knows everything that Thaddeus feels, and thinks he’s very aware of every emotion that he has. To a degree that’s far beyond what we're able to understand.

And now it’s time to talk about the rainbows. The other half of life with Thad. Listening to all this—all these diagnoses and procedures and types of equipment—you might get the idea that that’s all there is. But that’s far from the truth. Thad has favorite activities just like any other 11-year-old boy.

To find out what Thad enjoys, his family members watch his eyes and hands and look for tension or relaxation in his face and body. Sometimes he also makes little noises.

He really likes watching lights and balloons. So the Halls often leave up their Christmas lights long after the holidays. They tie bunches of helium balloons to his wheelchair. He also enjoys watching bubbling fish tanks and basketball games on TV. But his favorite thing, according to Meg, is running with his dad.

MEG: He loves being outside but his favorite thing to do is go on runs with dad. He always looks so chipper when we—when they get back.

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, Thad’s grandparents gave the Halls a jogging stroller for Thad’s 5th birthday, and Jake decided to start bringing Thad along.

You can get pretty high-tech and expensive jogging strollers these days. Some are just for hauling infants down paved paths. But others are very rugged. Built for pushing adults in cross-country races. They’ve become a thing in the past few decades in part because of Dick and Rick Hoyt.

In 1977 Rick, suffering from cerebral palsy, told his father that he wanted to participate in a five-mile benefit run. Dick was no runner at the time. But he pushed his son the full five miles and they came in second-last. That night Rick said, “Dad, when I’m running, it feels like I’m not handicapped.”

That was the starter pistol for a legendary running career spanning nearly 40 years. Dick pushed Rick through over a thousand distance races. Including Iron Mans and triathlons, using special boats and bikes to carry Rick. An HBO documentary on the Hoyts from several years ago noted that they ran dozens and dozens of marathons together.

HBO: Real Sports with Bryant Gumbel: Team Hoyt’s Inspirational Story: … the fastest in a time just half an hour off the world record. Yes, the real world record….

The Hoyts became legendary in the world of endurance racing. Fixtures at the Boston Marathon.

HBO: They say Dick Hoyt could have been an elite endurance athlete on his own. Dick’s not so sure.

DICK HOYT: I just don’t have the desire to be out there running by myself. It’s just something that comes from his body to my body. And it makes us go faster.

ANNOUNCER: Are you trying to say that you run faster pushing Rick than if you didn’t run with him?

DICK: Oh yeah. He inspires me and he motivates me.

Dick Hoyt passed away in 2021. Rick died earlier this year.

When Jake and Thad first started running, they only covered gentle distances. Two miles or so. Jake thought about running races with Thad, but most didn’t allow strollers.

But in May 2016, he got a crazy last-minute offer. Did he want to run with Thad in the Harpers Ferry Half Marathon? One of his friends knew the race organizers and offered to get them a spot. The race was the following day, and Jake had never run more than eight miles.

He said yes anyway.

MUSIC: Suspicious Sighting

Thad typically has a lot of seizures in the morning. But on race day, he was calm and alert. And no one acted like they were in the way.

JAKE: It was extremely painful, because I hadn’t trained.

Jake struggled through the race, crumpling briefly at mile 10 with severe leg cramps. But they finished.

JAKE: I let out a big yell. And then we kind of glided through, and they handed us our little medals. And we went off the side, and I put a medal around his neck, and just looked at him and, and I said Thaddeus, I’m so proud of you. Like, that was, that was what was on my heart to say to him, and I just felt, just so glad to have him as my son, and just so proud of him in that moment.

Jake had pushed him all the way. But Thad was there for every mile. In Jake’s mind, his son who had never walked had just finished a half marathon.

That race opened a world of new possibilities to Thad and Jake.

JAKE: Hey everybody, Jake and Thad. We are out here at Murphy Farm, beautiful night with these gorgeous clouds, and Thad is enjoying some trees…

Since 2016, they’ve run hundreds of miles together, including several half marathons. When Thad grew out of the jogging stroller, friends helped them raise money for a Hoyt racing wheelchair.

JAKE: Hey guys, what’s up? Jake and Thad, we’ve just finished our 4-mile loop here in Harper’s Ferry that we basically just run over and over and over. Saturday, May 1, beautiful day…

Life keeps getting busier. Jake and Rebekah became foster parents in 2021. They are now in the process of starting the UGDH Foundation to advocate for further research into Jamuar Syndrome. But Jake and Thad still run as often as they can. Jake posts running updates on a Facebook page, Run4Thad. He encourages others to get outside and persevere.

JAKE: It’s, uh, just like running, you know you go for a run, you, you set—you set your goal, you go and do it, it’s not about being faster than you were last time, it’s about finishing. It’s about finishing well, even if you have to walk some hills. If you’re out there and you’re in a low spot, I’ve been in a low spot. Comes and goes. But I just want to say, hey, keep going. Keep walking. One day at a time. There’s meaning to your life, there’s meaning to the work that you do, people depend on you, people love you. It’s like this little guy back here sleepin’. He depends on me, keeps me going; my wife, my daughter, keep me going.

Thad, his wheelchair, and his emergency equipment have a combined weight of about 120 pounds. As he gets older and heavier, running with him will get harder. But Jake is planning on plenty more runs with his son.

JAKE: So my goal is to be fit enough to be able to run with Thad as long as I can. So I’d like to be running until I'm at least 70.

The life expectancy for people with Jamuar Syndrome is unknown. And since that long hospital stay last year, every run feels precious. Back on the running trail, here’s what Jake told me. The creaking sound you’re hearing is Thad’s wheelchair.

JAKE: Sometimes it’s overwhelming. It’s okay to cry while you run. It’s hard, but you can do it. I just feel a lot of gratitude when I run from all that went into it.

Walking through this story with Jake and Thad reminded me that you never know what’s around the next bend in the trail. Life is hard, and life is fragile, and it’s so terrifyingly beyond our control. We can’t gloss over the hard parts. We can’t, because that’s how things are in a broken world. And it won’t always be that way. You know, we have heaven and healing and perfect joy to look forward to. But God is working right here and right now. It’s like that song Jake shared with me.

MUSIC: Oh, Love That Will Not Let Me Go

We can’t close our hearts to either the pain or the joy, because God is seeking us in both. He’s doing a thousand different things every second. But we don’t get to see all of that until the end of the race. So for now, maybe we just keep putting one foot in front of the other—or, keep rolling—and let Him take us through every mile.

LES SILLARS: This episode was reported and written by Elizabeth Russell. And produced by Emma Perley and the creative team at WORLD Radio.

This is the last episode in Season 2. Thanks for listening, and thanks to everyone who followed, rated, and reviewed us. We really appreciate it, and if you haven’t yet, you can still do so—or share it with friends. It really makes a big difference in helping other people find our show.

If you have an idea for a show for next season, or you just want to comment, send us a note: doubletake@wng.org. We always appreciate hearing from our listeners, and we read everything.

I'm Les Sillars. We'll see you next time.

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