Jackson Edward Reamer

Jackson Edward Reamer, 16 years old, of Crested Butte, Colo. was born on May 8, 2001 in Denver, Colo. and passed away in Fairplay, Colo.on August 13, 2017 from complications associated with Aicardi-Goutieres Syndrome. Jackson is survived by his two parents, Megan and Scott Reamer, his two younger sisters, Ella and Olivia and his younger brother Charlie. Jackson’s courage in the face of his extremely rare disease was exceeded only by his strength in managing and battling it. One of only seven diagnosed cases of his particular variant of Aicardi- Goutieres Syndrome, Jackson’s condition went undiagnosed for 12 years until the National Institutes of Health was able to finally diagnose him in 2014. Jackson carried the burden of his disease as if it were a feather. Despite many physical hardships, he laughed often and easily and he smiled as if he didn’t have a care in the world. Being a witness to that — being on the receiving end of those smiles and laughs — humbled all those who knew and loved him. He has left behind in his parents’, sisters’ and brother’s hearts an enduring spirit, an immeasurable fortitude, and a profound sense of gratitude for having been able to love him. Although Jackson was unable to speak, he commanded a room and communicated precisely what his needs, wants, and feelings were to those around him. The highlight of his winter — aside from the Denver Broncos — was skiing with his family and the wonderful volunteers who work at the Adaptive Sports Center. In the summer, he loved to roam around Crested Butte in his wheelchair, take drives into the surrounding mountains, and play with his friends and family in the backyard. Over the past several years, Jackson spent his school years in Boulder, Colorado while his family sought ongoing medical care at Children’s Hospital Colorado for his rare disease. His years at Southern Hills Middle School and his freshman year at Fairview High School in Boulder were an incredibly rewarding experience for him. Participating in football and basketball, homecoming dances, and spending time with his many school friends enriched his life in so many ways. His legacy lives on in the company, the mission, and the movement — Jackson’s Honest — that his struggled founded. One day the joy and privilege of having him in our lives with surpass the pain of having lost him to heaven. If you feel so moved, donations to the Aicardi- Goutieres Syndrome Americas Foundation will be gladly taken by that nonprofit to assist in the research and development of treatments for this orphan disease: www.agsamericas.org.

Gunnison Country Times

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