Our Story

Due to the diagnosis of our new-born daughter having Congenital Thrombotic Thrombocytopenic Purpura (TTP) - in June of 2008, we formed this website: www.CongenitalTTP.com

Our pregnancy was “text book” with no complications and full-term delivery. However, immediately after birth our daughter was having difficulty breathing and was quickly brought to the Neonatal Intensive Care Unit (NICU). The following seventy-two hours after her birth was touch and go, to the point of making the choice to have her baptized in the hospital. We cannot express enough gratitude to the doctors, nurses and entire staff at Sanford Health in Sioux Falls, SD; they are truly remarkable. With their help along with a lot of prayer, we were able to take our little girl home three weeks later…yet to be diagnosed.

A couple weeks after arriving home, she developed a fever and we immediately brought her back to the hospital. She was given blood due to her counts being low, followed by test after test to try and figure out what was going wrong. Nine days later we went home with a diagnosis of Congenital Thrombotic Thrombocytopenic Purpura (TTP).

We know that we have a journey ahead of us, not knowing really where the road is leading, we decided early on in the hospital we were going to do what we can to reach out to other people that may be experiencing similar fears and questions. We hope you find this site useful and informative. Please respond with comments on the contact link as to how we could make it better and we will do our best to accommodate.

Sincerely,
Bruce and Shari