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鈥檇 ever seen. Our seven-year-old, Leo, was giggling, grinning, and kicking his feet鈥攈is version of hiking鈥攁s 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鈥檓 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鈥檚 birth in the neonatal ICU at Children鈥檚 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鈥攍eaving 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鈥攆ive if we were lucky.

Instead of starting a new chapter cozying up at home in Leo鈥檚 woodland-critter-themed bedroom, we were going to enter parenthood as regulars at Children鈥檚. 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鈥檚 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鈥檚 life, and our lives, better. We wanted to nurture his unique body, and we poured everything we could鈥攆inancially, physically, emotionally, and mentally鈥攊nto finding creative solutions to encourage Leo to thrive, to be happy and healthy, for as long as possible.

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