Isolated Congenital Asplenia
I'm new to Connect. Isolated Congenital Asplenia (ICA) is the disease or genetic birth defect I'd like to talk about. It's a rare disease that almost no one has heard about.
We started T.E.A.M. 4 Travis (Together Ending Asplenia Mortality) after my 4YO son Travis died suddenly & unexpectedly hours after first contracting a fever in August 2018. It was only revealed during autopsy that Travis had ICA, or he was born without a functioning spleen. Without his spleen, Travis had a compromised immune system. He was unable to fight the bacterial infection he contracted. I never knew this until it was too late.
ICA is a primary immunodeficiency. With our 501(c)(3) foundation, our goals include fundraising for medical research, providing awareness and medical education and contributing to the development of a screening and treatment plan. Please reach out to me if you've been impacted by ICA or want to learn more.