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Kiley’s Camper – Pediatric Patient’s Wish Comes True
Posted on October 18th, 2021
“Kiley was the sassiest girl around,” said Kiley’s mom Krystal, as she rocked with Kiley in her lap in the recliner. At just six years old, Krystal’s sassy little girl began having troubles with weakness. After months of doctor appointments and comprehensive tests, the team at Seattle Children’s Hospital gave Krystal and her husband Kraig the devastating news. Kiley has Metachromatic Leukodystrophy or MLD. MLD is a rare, hereditary genetic disorder that causes fatty substances to build up in cells, particularly in the brain, spinal cord, and peripheral nerves. MLD is a progressive, incurable disease.
The disease progressed quickly. Before long, Kiley’s muscles began to spasm and become rigid, requiring increasing doses of medicines to relax the muscles and manage her pain. Two years later, Kiley is no longer able to walk or even hold her head up. Her terminal illness requires a lot of specialized equipment and constant care from her parents. Kiley will still offer a smile and a giggle in rare instances (she mainly saves those for mom!), and she is most comfortable in her favorite spot, rocking in mom’s lap.
As Kiley’s condition worsened, Krystal reached out to the Make-a-Wish® Foundation. Often, the wishes granted by the Make-a-Wish® Foundation are experiences or activities. Unfortunately, Kiley’s unique condition made it impossible for her to participate in the activities or adventures some terminally ill children experience through wishes. However, Krystal and Kraig were not discouraged. They thought long and hard about what Kiley would enjoy most, and the answer was clear: Kiley LOVED camping. Last spring, Kiley wished for a new camper. The Make-a-Wish® Foundation granted their wish, delivering a new travel trailer for Kiley and her family to enjoy.
When the camper arrived, Kiley’s hospice nurse, Jenni, wondered if there was a way to make her new trailer even more special for Kiley. Jenni connected with Käaren, the Outreach and Education Specialist at Hospice of the Northwest, and the two of them came up with a plan to personalize Kiley’s camper. Inspired by Kiley’s love for mermaids, Käaren designed and cut a vinyl decal for the back window of the camper. Before Kiley’s first trip, Jenni and Käaren installed the vinyl graphic, much to Kiley’s delight.
Kiley and her family have already taken some camping trips, including a very special long-distance trip through Utah, Oregon, and Idaho. During this trip, they were able to meet with other families with MLD kids and Kraig was able to make a very special connection to one of the dads. This trip would not have been possible without their amazing camp trailer! Thanks to the tremendous generosity of the Make-a-Wish® Foundation and a few creative hospice employees, Kiley’s wish has come true.
About Hospice of the Northwest
We are a skilled, caring, and compassionate team of doctors, nurses, social workers, spiritual counselors, aides, volunteers and generous community donors.
Together we provide patient-centered care for people facing serious illness. We’ve been serving the residents of Island, San Juan, Skagit and Snohomish Counties since 1989 and want to know how we can support you or your loved one.