The Brief, Wondrous Life of Little Leo

This article originally appeared on Outside

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.

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