Ian Dustan Memorial Nursing Scholarship
Ian was born suffering from mitochondrial myopathy, a genetic, progressive, incurable disease that caused organ failure and damage to his neurological system. As a result, he could never eat or drink. All liquids and nutrition came through ports in his chest and abdomen that frequently had to be changed. When able, he had to carry a heavy backpack with a battery and fluids. Virtually his entire life was spent in hospitals and at home.
He understood that he might die young, as much as a very young, small and spirited boy can comprehend such a fate, but he lived optimistically and, usually, positively despite his pain, limitations and isolation. He was warm with medical personnel and other visitors and embraced the joys and wonder of childhood where some saw only suffering. Ian loved freely and openly.
Ian was very sick; he was always sick. But at his core he was more a boy than a patient, and he dreamed like healthy boys dreamed. His fantasy was to move to Alaska when he was older, healthy and normal. Then he would build his own log cabin, the one he designed, and play with the Husky he would love so much. It would be an idyllic, natural life, living fee and outdoors, no longer confined and in pain. His baby sister would grow up and enjoy the Alaska life with him. He spent many lonely hours planning the log cabin and life he deserved. It was going to be good . . . someday.
Someday never came for little Ian. He died in 2017 at the age of 11. His was a hard life, but it was made so much better by the loving, skilled and compassionate care he received from his many caregivers, especially his mother Jaime and his JourneyCare hospice pediatric nurses.