MEET Luka & Family
As parents, Zach and I never in our wildest dreams would have predicted our lives. Three children. Two angels. Learning the medical vocabulary and how to navigate the health care system. What it means to not only be rare, but also undiagnosed for not one, but two children who are both angels. How to learn how to live and smile through it all, despite what circumstances you and your children are born into. We didn't choose this life, but it choose us and we're honored to help others with rare diseases along the way. We know how from personal experience how being rare and undiagnosed makes you feel alone, and our hope is that through support from the Luka The Lion Foundation kids with rare disease and their families never feel alone no matter what their diagnosis or lack of diagnosis ('undiagnosed.")
LUKA THE LION
Luka was born on March 4, 2014, the only day of the year that tells you to do something and coincidentally Mardi Gras. Yet, soon after we knew something wasn't quite right (an early ultrasound had given us a hint, too). This photo was taken of Luka at 20 days old during his first hospitalization after receiving a G-CSF injection to stimulate his bone marrow to make neutrophils (components of the white blood cells that fight infection). I remember being overjoyed that he was awake and alert, as he had been very lethargic since birth. After battling failure to thrive and a growing skin infection despite antibiotic ointment his first two weeks of life, a simple blood test at a general pediatricians office indicated Luka's absolute neutrophil count was 0. The doctors even repeated the test since "they had never seen a 0 before." After the same result repeated, we were sent to UNC Children's Hospital and met Dr. Philip Roehrs who prescribed G-CSF. Just 10 years ago, this treatment wouldn't have even been possible. At the time, it was suspected that Luka's condition may be worse than not having neutrophils, or "neutropenia" given how early he presented and other factors.
Little did we know at this time how extensive his unique condition was, enduring what seemed like endless diagnostic, genetic, lab, and whole exome sequencing testing in his first 12 months of life. From that testing, we found that there were other components of Luka's immune system that were missing, yet he didn't fit into the classic SCID (Severe Combined Immunodeficiency) diagnosis. He had four gene mutations one of which was novel and typically associated with another rare disease, HLH (Hemophagocytic Lymphohistiocytosis), and hadn't been seen before. And, after several mysterious bacterial and fungal blood infections, it was determined that his bone marrow wasn't compatible with life. Luka underwent chemo preparation and received a bone marrow transplant from an anonymous donor. Yet, complications post transplant from several viruses and an auto-inflammatory response was too much for his body. He passed away peacefully at the UNC Children's Pediatric Intensive Care Unit (PICU) on #GivingTuesday, December 1, 2015, surrounded by his Pride in a circle of love.
Yet, what was clear to us all was that Luka embodied the lion, and quickly became known as #LukaTheLion to his Pride of family, friends, and health care providers. Luka was brave -- seemingly always up for the next medical adventure, the next procedure, the next medication, the next chemo, the next injection. He handled it better than any of us could, and played through most of it. Luka was beautiful -- with a set of curls, a smile, and a wisdom that transcended his baby and toddler body. Luka was strong -- holding on as an infant and surpassing milestones despite major, life threatening disease. Luka was resilient -- no matter what, always pushing through to show us his soul even when he body struggled. His nurses may never forget his strong desire for his water bottle and sign language of "more please."
What Luka taught us all how to live with rare disease, despite it all. He taught science that you can have a disease that may be unique to you. He taught us that we can honor his spirit to help other kids with rare diseases and their families. He taught us to always remember to roar.
- Julia Fisher | Founder | Luka The Lion Foundation
