My 4-year old son Travis died swiftly and unexpectedly August 25, 2018, despite receiving medical attention for the sudden onset of a high fever. It was only from autopsy that I learned Travis had a rare genetic birth defect, Isolated Congenital Asplenia (ICA). He was born without a functioning spleen. Without his spleen, Travis was unable to fight the bacterial infection Haemophilus Influenzae Type A, he developed sepsis and was dead within 20 hours of first presenting with a high fever. Without his spleen, Travis suffered from this Primary Immunodeficiency.
Travis was always a healthy and robust child. He was tall for his age, strong, intelligent, active and most importantly, he passionately embraced life, collecting friends of all ages. He was always laughing, always having fun. To imagine that his brilliant light was extinguished due to the silent killer that is ICA was unbearable. To imagine that Travis would die 5 months to the day that his father (my husband) died from colorectal cancer was unfathomable.
After Travis’ death, a dear friend suggested there must be a purpose for good despite all of this tragedy. She urged me to do something to prevent other families from losing a precious child to ICA. Her suggestion planted the idea for the formation of our non-profit foundation, T.E.A.M. 4 Travis (Together Ending Asplenia Mortality). All who knew and loved Travis were convinced he was going to do something amazing with his life. We never imagined it would take this path, but it is the only way we have of carrying on Travis’ exuberant spirit and love of life.
As a mother with no formal medical training, I never realized the spleen was such a vital component of a young child’s immune system. What has surprised me is the lack of awareness about Isolated Congenital Asplenia within the medical community. I’ve had conversations with Emergency Department personnel, obstetricians and primary care providers. Many were unaware that Isolated Congenital Asplenia exists and, although rare, is often fatal.
T.E.A.M. 4 Travis has partnered with leading asplenia researchers. Our fundraising efforts will be directed to advance research and medical education about ICA, promote creation of a newborn screening, and develop a treatment plan for management of the disease. If our efforts are successful in saving one more child from dying from ICA, Travis’ legacy will live on.