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A family walk along the Poudre River, outside Fort Collins, Colorado
(Photo: Courtesy the Babler family)
A family walk along the Poudre River, outside Fort Collins, Colorado
A family walk along the Poudre River, outside Fort Collins, Colorado (Photo: Courtesy the Babler family)

The Brief, Wondrous Life of Little Leo

Originally Published Updated

When Leo Babler was born with a rare and deadly genetic disorder, his parents reshaped their lives, moving to the mountains, building out an adventure van, and making sure their son experienced the most beautiful wild places in the country during the time they had

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On a crisp November morning, my family and I walked along a trail that afforded us a view of the Elk Mountains. Lodgepole pines and golden aspens filtered the sunlight, their branches swaying in a soft breeze. The sky was the bluest I’d ever seen. Our seven-year-old, Leo, was giggling, grinning, and kicking his feet—his version of hiking—as my husband, Ryan, and I took turns carrying his 16.5-pound body in our arms.

We were in Crested Butte, Colorado, and we had parked our camper van at a random trailhead on Kebler Pass to take in the scenery and the changing foliage. We had the place completely to ourselves. In a word, it was magic.

Closing my eyes, I’m grateful for this joyful memory, now paired with hot tears streaming down my cheeks.

Leo was born on May 5, 2014, weighing seven pounds eight ounces, after a healthy pregnancy. Ryan and I were elated to be parents but were quickly blindsided by a diagnosis of rhizomelic chondrodysplasia punctata (RCDP), a devastating and ultrarare condition that affects fewer than one in 100,000 people worldwide. We spent the days after Leo’s birth in the neonatal ICU at Children’s Minnesota hospital in Saint Paul, near our home at the time, learning the scary details of his disorder.

RCDP drastically affects the musculoskeletal, nervous, and respiratory systems. Leo would never walk or talk. The soft tissues in his joints were severely contracted, and he would need daily physical and occupational therapy to relieve pain and, hopefully, someday move his limbs. Even though he was born at a healthy weight, his growth would slow and plateau—leaving him on the small side of the first-percentile growth curve for kids his age going forward. He would need surgery to remove the lenses from his eyes, which were full of cataracts that limited his vision, and special glasses or contacts to see. Doctors explained that spinal surgeries would likely be necessary to alleviate scoliosis, spinal compression, and stenosis (the narrowing of the spinal canal against the spinal cord) as he aged. He would have to be fed through a gastrointestinal tube (G-tube). His immune system was compromised, which meant he would be acutely susceptible to illness. Seizures could be expected as he got older. Experts said Leo would live between one and three years—five if we were lucky.

Instead of starting a new chapter cozying up at home in Leo’s woodland-critter-themed bedroom, we were going to enter parenthood as regulars at Children’s. In those early weeks, it felt like we were standing at the base of a mountain made of grief and despair. Despite the story Leo’s doctors and other medical caregivers told us about how difficult his life would be, we still had hope. We began researching holistic, complementary, and alternative therapies that might make Leo’s life, and our lives, better. We wanted to nurture his unique body, and we poured everything we could—financially, physically, emotionally, and mentally—into finding creative solutions to encourage Leo to thrive, to be happy and healthy, for as long as possible.

We lived in Hudson, Wisconsin, a small town along the Saint Croix River near the Twin Cities. We worked from home, Ryan in software quality assurance and myself in a new role with a health and wellness company. I’d spent the prior three years building a private massage and bodywork practice, but shuttered it in exchange for a less demanding part-time job at a personal wellness company with flexible hours that would allow me to more fully prioritize Leo.

A typical morning began at six, when Ryan and I would quietly get work done, sitting across from each other at a shared desk and enjoying coffee before Leo woke for the day. We’d hear him rustling and squawking from down the hallway around 7:30, signaling it was time to begin our daily family routine. I’d put in his contacts, which he began wearing at six months, and dress him, while Ryan prepared his breakfast G-tube feeding.

When Leo wasn’t being held, he would laugh and squeal as he played on a musical activity mat. He’d reach for brightly colored toys that hung above him, and stomp his feet on sensors that played nursery rhymes.

Ryan always had a number of computer tabs open, to research minerals, supplements, and additions to the organic purees we whipped up for Leo in our Vitamix. Our days revolved around Leo’s feeding schedule: he needed to eat every three hours to ensure he got enough calories, despite his smaller-than-average stomach. Ryan handled the bulk of Leo’s meals, cradling him in his left arm while feeding him via G-tube with his right.

We balanced meetings and workloads with Leo’s many weekly appointments—often two per day, which I took him to. He regularly saw his pediatrician, a craniosacral therapist, an acupuncturist, a Feldenkrais practitioner (someone who specializes in mindful movement), and a chiropractor. I spent an hour each day doing massage and bodywork with him, typically on the couch with Netflix playing in the background. Except for the pediatrician visits, none of the above were prescribed by his doctors. But the care and focused treatments allowed us to opt out of some of the surgeries—the doctors were surprised at the overall health of his spine, which was mobile and stable though still curved.

Leo was, in fact, exceptionally healthy. Aside from the eye surgeries, performed in the first three months, no invasive medical interventions were necessary. As he aged, things didn’t get worse. They either stayed the same or, in some cases—as with the spinal stenosis—improved slightly. Leo remained tiny in stature, delayed physically and mentally, essentially a perpetual infant.

He never learned to speak or walk, and we relied on facial expressions, body language, and gut instinct. We learned his likes and dislikes by paying attention to subtle cues—and sometimes obvious ones, like tears or smiles and laughter. His mobility was very limited. His neck was too small for his head, so he couldn’t sit upright. We set him in a partially reclined posture so he could play; he especially loved musical toys with buttons he could push with his elbows or left pointer finger.

Around his first birthday, we learned that Leo loved to be outside. When we took him to the boardwalk along the Saint Croix River and to local state parks, his eyes lit up and the laughter flowed. Time in nature seemed to energize him. That quickly became an evening and weekend routine: family walks, with Leo loving all the sunlight and fresh air he could get. We ambled through the prairies of Afton State Park, visited spectacular Willow Falls, and planned weeklong trips to northern Minnesota to enjoy the shores of Lake Superior.

He never learned to speak or walk, and we relied on facial expressions, body language, and gut instinct. We learned his likes and dislikes by paying attention to subtle cues—and sometimes obvious ones, like tears or smiles and laughter.

In our best moments, we were simply a happy family basking in the great outdoors. But children with RCDP have difficulty regulating body temperature. The Upper Midwest’s dramatic seasonal swings—sweltering summers and bitterly cold winters—were a challenge for Leo. He couldn’t tolerate the cold and heat. There were significant portions of the year when we simply couldn’t be outdoors.

Instead, we brought the outside to us. We built a spacious screened-in porch with an A-frame roof on our back deck. Ryan and I spent hundreds of hours bringing it to life over the spring and summer of 2017, while Leo played in a hammock chair overlooking the garden. In the warm months after it was completed, we spent sunup to sundown out there. But our oasis offered no reprieve from the brutal winters. We endured weeks cooped up inside and months of seasonal depression. Despite our efforts, we were unhappy much of the year.

A few weeks after Leo’s fifth birthday, in July of 2018, we sold our home, packed up our belongings, and drove west. Leo was now as old as the most generous prognosis he’d been given at birth, but Ryan and I were used to our son’s miraculous health and happiness. The specialists we checked in with annually only had positive feedback, and the more distressing details of Leo’s condition were stashed into the back of our minds. We figured it was time to find a home better suited to our son and the life we wanted to share with him.

We rented a two-bedroom apartment with a large west-facing balcony in southeast Denver, less than ten minutes from Cherry Creek State Park. By mid-July, we were regulars at the 107-acre dog park, where we took daily sunset walks along a three-mile dirt trail. One of us pushed Leo—cozy in his car-seat-mounted off-road stroller, grinning and giggling at every jostled bump, every bark—while the other wrangled the dogs: Albert, an energetic mutt, and Kaya, a mellow terrier mix. We headed into the Front Range on adventurous day trips, but simple evening strolls with the Rockies in the background made us feel at home.

In early October, we went on our first family trip to Rocky Mountain National Park, leaving the dogs at home. We felt like we were in a postcard, looking out at enormous peaks from grassy meadows and pine forests under a bright blue sky. Even though we had purchased the best off-road stroller we could afford, our options for accessible trails were limited, so we stuck to easier lakeside paths. When we were halfway around Bear Lake—one of the most popular nature trails in the park, providing mirror-clear reflections of the surrounding summits in cobalt-blue water—Leo started to cry. This was uncharacteristic: he had never been fussy. We were in one of the most beautiful places in the country with our son who loves nature, and he was upset. Maybe he was hungry or tired?

Ryan took his time driving us to the main exit of the park, toward an extension trail system around Lily Lake. I sat in the back next to Leo, comforting him with a favorite stuffed animal and a quick meal through his feeding tube. I balanced the large syringe in one hand and ran my fingers through his soft brown hair with the other.

At Lily Lake, we stepped out of the car into a gravel parking lot, the sun softly shining through puffy clouds. Leo, relaxed and full, seemed ready to hit the trail, which wrapped around the turquoise lake with huge views of Mount Meeker and Longs Peak. Again, however, about halfway around the lake he started to cry.

Instead of hightailing it back to the car, Ryan unclipped Leo’s restraints, pulled him out of the stroller seat, and held him. Leo stopped crying immediately, and we continued our stroll. Barefoot and wearing jean shorts designed to fit a three-month-old, a Where the Wild Things Are onesie, and tiny tortoise-frame sunglasses, Leo lit up in his father’s arms. Ryan cradled him facing outward, so he could experience the scenery as easily as we could. I followed behind with the stroller, taking in the swooning reactions of fellow tourists to Leo’s chubby cheeks and giant baby-toothed grin.

From that day forward, aside from visits to the dog park, we were done using Leo’s stroller. Over the next two and a half years, we carried him along more than 1,000 miles of trails all over Colorado.

Leo, age five, at the Bablers’ home in Hudson, Wisconsin
Leo, age five, at the Bablers’ home in Hudson, Wisconsin (Courtesy the Babler family)

I’d never been the mom type. When I was little I didn’t play with dolls, and I never babysat the neighbors’ kids. Before I met Ryan, having children wasn’t a sure thing. In fact, the idea of playing the assumed lead parental role felt unnatural and daunting.

But Ryan was kind, smart, sensitive and had a quiet confidence unlike anyone I’d ever met. He adored our friends’ babies and was a natural with them. My awkwardness around them seemed balanced out by his ease.

We met in college at the University of Wisconsin—River Falls, a few months after I returned from studying abroad in New Zealand. At the time, I was focused on graduating so that I could get back to Christchurch. But we fell hard for each other. I taught him the art of mixing a good Bloody Mary, and he played me reggae music while I rode shotgun in his purple Dodge Neon. We’d watch the Green Bay Packers on Sundays in our college-town bar. My dreams of moving overseas began to fade. We both graduated, took jobs in Saint Cloud, and moved in together after six months of dating. Our relationship was fun-loving and pure; we were open and communicative, and knowing that we were on the same team made facing the world easy.

The plan soon became: get married, move closer to friends and family, and have kids. I went back to school to get my bodywork and massage license, figuring that a job with flexible hours would be perfect for a new mom. But when Leo was born, our plan quickly went out the window.

Originally we hoped to have three children, but after Leo was born we learned that there was a one-in-four chance any other children we had would also have RCDP. It’s extremely rare—both parents need to contribute a gene mutation that only one in 1,000 people have. Choosing to devote ourselves to Leo made sense.

Much of our time during Leo’s first five years was spent trying to slowly let go of who we thought we were and what we thought our life would be. We found new hobbies and incorporated new lifestyle choices. Our Sundays no longer revolved around watching football; instead we ventured out to local trails for family hikes. We attended yoga classes in hopes of meeting new friends. In an effort to maintain our own health, we gave up our love of red wine and craft beer for a sober lifestyle.

When we decided to move west, leaving behind all we’d ever known in western Wisconsin felt scary. What felt scarier, though, was falling into a life of complacency. Still, we weren’t without our doubts. Who does this? we thought. Who packs up and leaves, running toward a life of adventure with their terminally ill child? Are we crazy?

One early June morning in 2020, Ryan and I sat together on a park bench in front of the Children’s Hospital Colorado campus in Aurora while Leo underwent a routine MRI. As we drank coffee and shared a blueberry muffin, we joked that this was the closest thing to a date we’d been on in over a year. But there wasn’t anything we’d change. Well, maybe one thing. After a brief pause, Ryan asked, “Would you want to build a camper van together?”

We wanted easier wilderness access for Leo and harbored dreams of exploring the country as a family. The next day, we bought a Ram ProMaster headed for auction. We nicknamed it Leona.

We dived into the project, imagining a thoughtful adventure rig for our unique family situation. For instance, we’d need a small sleeping space for Leo and somewhere to secure his car seat, so we designed a compatible bench with storage that doubled as a bed. The kitchen was behind the front seats and allowed for a narrow gap that let me easily check on Leo while Ryan drove.

By then we’d left Denver for Boulder, looking for quieter streets and easier access to the foothills. Over the next three months we spent all our spare time—
easily 30 hours a week—working on the van in our apartment driveway. We hoped we’d be able to take a trip to Wyoming’s Grand Teton National Park before summer’s end.

In early September, excitement masked our exhaustion from the project as we headed north toward the Tetons. We spent mornings hiking and sightseeing around the park, cautious of crowds and keeping Leo clear of potential contact with COVID-19. In the early afternoon, we’d find a place to camp and settle into our little corner of wilderness for the evening.

Ryan and I played cribbage while pushing a joyful Leo in a baby swing mounted to the frame of the sliding door. We followed our usual evening schedule: one of us made dinner while the other mixed Leo’s food from the glass jars of puree that took up half the space in our small refrigerator. Then he’d get a G-tube feeding while lounging in a camp chair. As darkness fell, we moved indoors, read bedtime stories, and tucked Leo into his convertible bench bed. It was bliss.

We seized on the good days and celebrated with trips to Rocky Mountain National Park, Horsetooth Reservoir, and Red Feather Lakes for hikes and picnics. On challenging days, we snuggled on the couch, taking short neighborhood strolls in the December sunshine. These ups and downs were a crushing mind game.

We snuck in a few more local trips before winter set in, and then decided to buy a house in Fort Collins. Colorado had begun to feel like home, and the approachable college town seemed like the perfect place to put down roots.

But two weeks after we moved in, Leo began to suffer from neurological and gastrointestinal issues. His doctors were baffled. Test after test failed to shed any light on what was going on, and his overall health was excellent. During a weeklong hospital stay, the doctors chalked his symptoms up to a virus or constipation. A month later, during a second hospital stay, a sleep test revealed that Leo was experiencing severe apnea; this made his heart rate drop overnight, which was dangerous in the moment and also caused his body to struggle throughout the day. The good news was that a CPAP machine would likely resolve the issue. Ryan and I breathed a full-body sigh of relief when we learned that our son might get back to his usual, vibrant self.

Since Leo was born, we had chosen to distract ourselves by doing all we could to keep him healthy and happy. This came at the price of putting our heads in the sand about the more heartbreaking details of his disorder. During those months of illness, a recurring dream of the discussion with neurologists the day after his birth haunted me. Night after night, I was reminded that Leo’s projected life span had been one to three years, five at best. I’d wake up to the renewed realization that our almost seven-year-old was living on borrowed time.

The CPAP vastly improved Leo’s symptoms, so we paused our overnight trips until we could purchase a travel device. Since Ryan and I were able to work from anywhere, and wanted to avoid the area’s terrible weekend traffic, we dedicated one day midweek to working from the van.

A 4:30 a.m. alarm would pull us out of anticipatory half-slumber, and we would load into our fully provisioned vehicle. The last piece of cargo was a stealthily transitioned, still-snoozing Leo. Heading west before the sun rose, I’d pour us coffee from a thermos and we’d quietly plan our day.

Each trip included a new hiking trail for Leo, solid cellular reception so we could use our phones as Wi-Fi hotspots for working, lake kayaking on a break or after work, and a picnic at what became our regular pull-off spot along Trail Ridge Road, overlooking Forest Canyon in Rocky Mountain National Park. We kept this new tradition alive mid-July through early October, not missing a single week, up until Trail Ridge Road closed for the winter.

In the spirit of living for today, we planned two back-to-back October trips in Colorado: the first to Crested Butte, and the second to the San Juan Mountains, with stops in Telluride, Ouray, Silverton, and Durango. We hiked, kayaked, and read aloud on our lofted bed, with Leona’s back doors open to the mountains.

The aspens were never more golden, the skies never more blue, and Leo’s joy never more buoyant. Our hearts were as full as they’re ever likely to be.

illustration of Little Leo enjoying nature
(Sally Deng)

In the months following these excursions, Leo’s health deteriorated. He was now seven and a half, and we assumed his diagnosis was finally catching up with him. He would spend a few days seeming like his normal exuberant self, followed by days of agitation and renewed neurological disruption. Tests offered no explanation for his downturn. Increasing his chiropractic and acupuncture treatments didn’t help, so we relied on medication to take the edge off of bad days. We felt lucky to have gone so many years without the regimen of pharmaceuticals we’d been told he’d need for the rest of his life.

We seized on the good days and celebrated with trips to Rocky Mountain National Park, Horsetooth Reservoir, and Red Feather Lakes for hikes and picnics. On challenging days, we curled up on the couch, taking short neighborhood strolls in the December sunshine. These ups and downs were a crushing mind game. On good days, we felt as though our healthy little buddy and his big energy were back for good. Then, out of nowhere, he’d become a dull shadow of himself.

His body was shutting down. His digestive system no longer worked as it had. In a matter of days, he seemed to lose every ounce of fat on his small frame—chubby cheeks included. The bad days quickly outnumbered the good. We had a consultation with his care team, and a plan was put in place to provide closer monitoring from home.

The next day Leo rapidly declined. We held him for hours on our cozy gray sectional, which had traveled with us from Wisconsin and all over Colorado. Snuggled under blankets, we listened to his favorite music and talked to him about our most memorable adventures. We prayed this wasn’t the end, but assured him that if it was, we’d be OK without him—a lie. Late on the morning of January 14, 2022,  he drifted off to sleep and never woke up.

On Halloween in 2020, we dressed Leo up as Smokey Bear’s helper, sharing pictures on Instagram of him “trick-or-treating” in the woods, with signs encouraging fire safety and thanking our wildland firefighters. We were surprised by the overwhelming response: firefighting crews all over the country sent him patches and notes. Learning of his passing, many were heartbroken. Some now wear a dedicated Leo sticker on their helmet, as if he’s their guardian. His photos are still shared throughout the fire community as a beloved mascot.

Leo touched the lives of everyone he came in contact with over his too short lifetime. Hikers we encountered were charmed by his beaming, no-matter-the-season smile and commented on his bare or moccasined feet, Colorado baseball cap, or baby-size Patagonia fleece. “Way to get them out young!” they’d say, with no idea of his actual age.

With thousands of memories as proof that we gave him the best life we could, Ryan and I hold Leo close to our hearts and are learning to carry on. His absence is viscerally painful, a gaping hole. But we are soothed by the same places we found solace when he was alive: in nature, hiking new trails, and embarking on frequent outings—which we call our “grief road trips”—in Leona.

After his passing, the Colorado landscape became a cruel reminder of what we’d lost. Visiting our favorite stomping grounds brought on punishing headaches and gut-wrenching knots in our stomachs. So we sold the house, packed up our things again, and relocated to the Pacific Northwest. Our new life has been full of temperate rainforests, stunning waterfalls, and long walks along the Pacific Ocean. We are pouring our fierce love for Leo into a series of children’s books—starring him—about the magic of playing outside.

No matter where we are, Leo continues to make his presence abundantly clear. When we visited Utah’s Mighty Five national parks—a trip we had planned to take with him—a peregrine falcon flew along the driver-side window on a stretch of rural mountain highway. One of Leo’s favorite songs, “Hello” by Martin Solveig, came on the radio as we pulled into Cannon Beach, Oregon, for a sunrise stroll. On a cliffside at San Juan Island, Washington, as I searched for orcas and thought about how much fun Leo would be having with us, I looked down and noticed a perfect heart made of pale pink lichen on the rock at my feet. And when we commemorated what would have been Leo’s eighth birthday at one of our favorite camping spots in Colorado, we came upon the astonishing sight of eight bighorn sheep walking in unison down the middle of the road.

From January/February 2023
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Lead Photo: Courtesy the Babler family