{"id":295442,"date":"2023-07-30T13:54:56","date_gmt":"2023-07-30T18:54:56","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=295442"},"modified":"2023-07-28T17:30:04","modified_gmt":"2023-07-28T22:30:04","slug":"parents-carried-terminally-ill-colorado-trails","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/parents-carried-terminally-ill-colorado-trails\/","title":{"rendered":"Parents carried terminally ill son over 1,000 miles of Colorado trails"},"content":{"rendered":"
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\u201cGiggling.\u201d \u201dJoyful.\u201d \u201dExuberant.\u201d Those are the words Lewann Babler used to describe her terminally ill son Leo, who died in January of 2022 after seven-and-a-half short, but adventurous, years of life. In a story for Outside<\/a> magazine, Babler shared the story of her son\u2019s brief, \u201cbig energy\u201d time here on earth, especially his love for the great outdoors.<\/p>\n

Leo was born to parents Lewann and Ryan of Wisconsin in May of 2014. After a healthy pregnancy, the Bablers were taken completely by surprise when their infant son received a tragic diagnosis. Leo had rhizomelic chondrodysplasia punctata (RCDP), a life-limiting and extremely rare form of dwarfism. Though he was a normal weight at birth, RCDP\u2019s impacts on Leo\u2019s musculoskeletal, nervous, and respiratory systems meant that physically he would remain \u201cessentially a perpetual infant,\u201d unable to walk or talk or even sit up by himself. His parents were taught to feed him through a G-tube, a feeding tube surgically inserted into the stomach. He needed multiple eye surgeries in his first year of life to remove cataracts, and part of his morning routine involved his parents inserting contacts so that he could see. Lewann and Ryan were told Leo was terminally ill and wouldn’t live long; likely just a few years, but perhaps as many as five.<\/p>\n

Lewann recalled Leo\u2019s first weeks of life, which were spent at Children\u2019s Minnesota Hospital not far from their home, as feeling like \u201cstanding at the base of a mountain made of grief and despair.\u201d Gradually, as they adjusted to the tasks of their son\u2019s special needs and the emotional weight of Leo being declared terminally ill, Lewann and Ryan resolved to focus on the good, and what was<\/em> in their control.<\/p>\n

\u201cDespite the story Leo\u2019s doctors and other medical caregivers told us about how difficult his life would be, we still had hope,” Lewann said. “We began researching holistic, complementary, and alternative therapies that might make Leo\u2019s 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.\u201d<\/p>\n