We welcomed Kinsley into the world the day after Christmas in 2013. Her big brother and three sisters waited with cuddles and unconditional love. Our family was complete.
At two months old Kinsley began to turn blue. While at the hospital they discovered she had issues with her brain. Her first surgery followed later that week. We didn’t know it at the time, but the next eight years of her life would be spent living in the hospital for weeks at a time, 5 code blues, 21 different symptoms without a diagnosis, and over 50 surgeries/procedures.
With each hospitalization our family was separated, Dupont is in Delaware, and I was a stay-at-home mom. In my absence, we never left Kinsley alone in the hospital, her siblings were left in the care of family and friends. Relying on our community to help while I was gone and my husband worked. Routines shifted, unanswered questions, and the extra care required at home were challenging. Yet our children’s love for their sister grew. They learned the medical terms, researched her symptoms on their own so they could better understand her body and symptoms. They never see her as an inconvenience and she is a natural part of everyday life, involved in every family activity. She is their baby sister -she isn’t just tubes, IVs, and medical equipment she is their playmate, and they enjoy their time together.
Kinsley resembles a porcelain doll with porcelain skin, brown wavy hair, and huge blue eyes. Her smile is only erased by pain. Her petite frame might signify fragility, but her strong will and fighting spirit rival that of a heavyweight boxer. Her body has been through more than most people would endure in three lifetimes, yet she continues to be happy and full of love. Her contagious laughter, wicked sense of humor, and unwavering strength and resilience have been stealing hearts while redefining what it means to be a complex medically fragile child. She loves red, listening to music, bubbles, and long walks in her wheelchair. Kinsley was diagnosed two years ago with FOXG1 syndrome. To date, there are only 1,100 people across the globe with this diagnosis. There is no known cure or treatment.
She suffers from life-threatening seizures that turn off the part of the brain that signals breathing. Unfortunately, we have experienced this at home without nursing care and had to resuscitate her. She is non-verbal but says more with her facial expressions than anyone could with words. She cannot eat food, only tasting, and hasn’t taken her first step… yet. Despite the original prognosis that she would not live to see her first birthday, she just celebrated her 11th birthday the day after Christmas, she continues to be a force of nature and an example that anything is possible.
We are beyond grateful to the Shannon Daley Memorial Fund for choosing our family. The hard work and dedication of the volunteers who created this event and gave so generously are appreciated. Many blessings to you all.