It is with great sorrow we announce that Kelsi Lynn Gildersleeve died peacefully in her sleep on January 11, 2020, in her and her care-giver’s (Regina Wilson) home in Alexander, North Carolina, from complications associated with Rett Syndrome.
Born in Cortez, Colorado, on August 1, 1982, she was the beloved daughter of Ronald C. (Liz) Gildersleeve of Conover, North Carolina, and Katherine (John) McGuffey Gildersleeve Carver of Leicester, North Carolina. Kelsi is survived by both of her parents; her older brother B. Nickolas (Sarah Tennyson) Gildersleeve of Waynesville, North Carolina; her younger sister Kristina (Lewis) Gildersleeve Dortch of Missoula, Montana; her young nephew and nieces, Heath, Marylou, and Caroline Dortch; her devoted long-term care-giver Regina Wilson of Alexander, North Carolina; her grandfather James Dale (Linda) McGuffey; her great-grandmother Katherine McGuffey Haikkila; and many aunts, uncles, cousins, and dear friends.
Kelsi had classic Rett Syndrome, which is explained on www.rettsyndrome.org: “Rett syndrome is a rare non-inherited genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. The hallmark of Rett Syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett Syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.”
Kelsi was a beautiful person with bright intelligent eyes and a gentle loving demeanor, trapped in a body that would not work. The first twelve months of Kelsi’s life her development seemed on track, but by eighteen months we had become increasingly concerned. Kelsi was not talking and she began regressing – losing skills: losing the ability to use her hands to feed herself, losing the ability to do transitions like going from sitting to standing, losing the ability to dress herself. This is called the “rapid deterioration” stage of Rett Syndrome, during which children cry and scream inconsolably for no apparent reason. In 1984 knowledge of this rare disorder was mostly unknown in the United States, yet we were fortunate to receive an accurate diagnosis from diagnostic specialist Sarojini (Sudge) Budden, MD, with the Oregon Health Sciences University’s Child and Development Rehabilitation Center in Portland, Oregon. For years, Kelsi was taken to this excellent center for physical therapy (that kept her walking) and other services. Then at around two years of age Kelsi went into the “plateau” stage and the deterioration and inconsolable crying mostly stopped and repetitive hand movements and seizures began and persisted. She needed total hands-on care for her entire life. In Kelsi’s teens, Rett Syndrome moved into the “late motor deterioration” stage, the final stage of Rett during which she developed scoliosis, reduced mobility, kidney stones, and other maladies. Kelsi loved eating, she thoroughly enjoyed the independence of walking around in a pool of water, being outdoors, cuddled up watching movies, and spending time with her devoted care-giver, family, and friends. Thanks to the attentive loving care she received during her lifetime, Kelsi had as full and rich a life as possible. She enriched the lives of everyone she touched. We eagerly await the resurrection at the second coming of Jesus when Kelsi will be raised in all her beauty without this debilitating disease and we will rejoice for eternity with one another. Come soon, Lord Jesus!
For more information on Rett Syndrome, go to: https://www.youtube.com/watch?v=MD_eO7WLheY (a 3 minute “What is Rett Syndrome” video)
A memorial for Kelsi will be held on Saturday, January 18, 2020, at 2pm in the Sanctuary of Foster Seventh-Day Adventist Church, 375 Hendersonville Road, Asheville, North Carolina 28803. A Fellowship Meal will be served before the service at 12:30pm. Folks are also welcome to come to the Worship Service at 11am.
In lieu of flowers, the family asks that a Tribute Gift in memory of Kelsi Gildersleeve be given to Advance Research to Treat and Cure Rett Syndrome Research at https://www.rettsyndrome.org/get-involved/donate/research-to-reality/