Kyra Nicole Hilden
Kyra Nicole Hilden
July 20, 2001
– July 21, 2017
Daughter of Tim Hilden and Natalie Smutzler
Sister to Tess Hilden
Granddaughter of Merle and Yvonne Hilden (Milan)
When Kyra was in third grade (the last year that she was able to attend a full year of school), her teacher asked the students to write down one adjective to describe each child in the class. Some of the adjectives used to describe Kyra were “fun”, “smart”, “kind”, “cool”, “calm”, “awesome” and even “awesomely kind”. Kyra shares many of these traits with family members. She shares kindness with Grandma Vonnie and Grandma Lois, calmness with Grandpa Merle, Grandpa Lee, and Uncle Jeff, and fun with Uncle Dirk. She and her sister, Tess, share all of the listed qualities and both girls were smarter than their parents from a very young age. We think these adjectives capture Kyra’s essence quite well and would just add some of the things she loved to the list: science, baking, Snapchat, Pinterest, the outdoors, snow, the ocean, and training her service dog. And she loved doing all of these things with Tess.
As a young child, Kyra’s favorite book was Some Busy Hospital. We would turn its pages over and over again and it fueled her fascination with the inner workings of a hospital system – all of the people and all of the spaces. Her love for this book provided the first inkling that she was deeply drawn to medicine and science. An even more obvious hint was that every stuffed animal, doll, and human received a pretend shot from her, the favorite point of insertion being the forehead. (Tess devised escape tactics as soon as she developed the ability to walk.) These things led us to think that Kyra may one day become a doctor and she indeed proclaimed this desire sometime in elementary school. None of us ever imagined that she actually would be on the receiving end of endless medical services and that we would need to learn the inner workings of real hospital systems. And we certainly never imagined that we would be required to learn things about five hospitals in four states.
Although the realities of a hospital system don’t quite match the depictions in a children’s book, we are deeply grateful that we found Rocky Mountain Hospital for Children, where we became intimately familiar with the names and jobs of many people and the purpose of many spaces. All together, Kyra spent over a year of her life at RMHC and if we were to write a children’s book about a hospital, we would use them as our model. Many thanks for their exceptional care and extraordinary support over the past five years.
Like most families who have children with undiagnosed diseases, we sought assistance from numerous medical facilities. Although this journey was sometimes filled with darkness, we encountered many medical professionals who embodied the concept of compassionate care. We especially would like to thank Dr. Melamed, Angela and Monica at IMMUNOe Health and Research Centers and Dr. Van Hove and the staff at the Genetics and Inherited Metabolic Diseases clinic for their dedication and determination to help families like ours. We also would like to express our gratitude to Kyra’s pediatrician, Dr. Bryan Kono, and his staff, who provided the very definition of patient-centered care.
We extend a heartfelt thanks to those who provided home care for Kyra over the years: Marilyn, her nurse of five years; and Tiana, Kelly, Kelley, Amy, and Jessie, who offered Kyra love and laughter and a break from her parents. Loving thanks to her close friends: Abby, Audrey, Ava, Kenzie, Madelene, and Maria. Love to her cousins: Jordan, Shannon, Misty, Sydney, Tanner, Jennifer, John, Jill, Jeanna. Love to her cousins-through-friendship: Nathan, Ben, Hayleigh and Kara. Thanks to the teachers at Heatherwood elementary and her fourth grade homebound teacher, Rebecca. Thanks to Sallie, Gerry, and Kellie for their friendship and for giving us Lila, the best service dog in the world. Thanks to Laura, for all of the yoga sessions and gentle spirit. Thanks to the hundreds of people in Kyra’s support network who, literally and figuratively, helped us keep it together through very challenging times. And a special thanks to the the Medicaid Waiver and PASCO programs. These programs allowed Kyra to be cared for at home and allowed us to keep our jobs.
If you would like to do something “awesomely kind”, we ask that you donate money to the Kyra Cares fund through There With Care (http://therewithcare.org). There With Care has provided us with unwavering support and a wealth of services and resources. We are so pleased that our relationship with them will continue through this fund. We also will continue our relationship with Rocky Mountain Hospital for Children, as the Kyra Cares fund will be used to provide travel-related services for Colorado families who need to seek care (diagnostic and/or treatment) at hospitals that often are far from home. Many families cannot afford the unbelievable costs associated with medical travel and we cannot think of a better way to honor Kyra’s spirit than to help cover some of those expenses. Indeed, one of our trips to an out-of-state hospital led to new testing, which led to a treatment option that not only saved Kyra’s life but drastically improved the quality of it. When we felt helpless about Kyra’s condition, we often would say, “The science just isn’t there yet.” We hope that this fund will help the science get there for some of the children with undiagnosed diseases. Above all, Kyra wanted us to raise money to help children like her.
We love you, Kyra. We love your bright light. A light that was dimmed by illness but never extinguished. Shine on, sweetie.
There With Care Donations:
If sending a check, please write Kyra Cares in the memo line
If donating online, please do the following in the Tribute Information section: Dedication – select In Memory of. Name of Honoree – type in Kyra Hilden. Additional Information – type in Kyra Cares.
Full Obituary available in our paper.