Meet Tiny Light Kate. Kate was born in October, 2007, bringing much joy to her mom Julie, her dad Brian, and her older brother Jack. She appeared to be a normal newborn baby, but after nine months of age, she had to be brought into the hospital repeatedly because of severe illnesses. The Drury’s were given a diagnosis each time, but not one that explained why Baby Kate was serially ill or why she was increasingly unable to meet developmental milestones. It took three years for doctors to determine that Kate has Sideroblastic Anemia, B- cell Immunodeficiency, Periodic Fevers and Developmental Delay - SIFD, which is an extremely rare, recessive genetic mitochondrial disease. Knowing what it was that caused their little girl so much pain and suffering might have helped if there was a course of treatment based on that diagnosis, but Kate is the first child ever to be diagnosed with SIFD. It broke the Drury’s hearts to learn that there is no known way to fix their baby girl’s problem.
Kate has been a champion, helping doctors to learn more about SIFD, enduring many tests and illnesses. “She has shown incredible strength, perseverance and stoicism,” says Julie, who loves and admires her daughter’s toughness.
Knowing that Kate truly enjoys all of her healthy moments helps the Drury family live with the uncertainty of Kate’s day to day future. Kate loves playing in water, gymnastics class, and all things ‘Dora.’ Now five, she attends school and plays with the other children. Her love of water led the family to vacation in the Bahamas, thanks to the Make a Wish Foundation. She is learning sign language to cope with her deafness, and she eagerly makes new friends. She has lost her hearing and is medically vulnerable, but she lives each day as a gift and has hope that the next will be even better.
Story written by Andrea Lee
Images Captured by Annemarie Gruden Photography