This is Tyler's story (written by her mom, Christie).
This is our daughter, Tyler Kacee. Two weeks before my due date I noticed decreased movement. My doctors dismissed my concerns, telling me I was just having a big baby so there wasn't much room for her to move.
ON 5/8/1991 (my due date), I was induced and had a C-section. When Tyler was delivered, she had an enlarged liver and spleen. The doctors told us it was a virus, and that it would run its course and she would be fine. Tyler was discharged from the NICU at five days old. The following day, she had a checkup with her pediatrician, and they told us there was something seriously wrong with her and she was re-admitted to the NICU.
Tyler spent three weeks in the NICU, progressively getting worse during that time. All the blood lines continued to drop, and she was transfusion dependent with elevated liver function. The doctors came to us with a three-paragraph medical journal about FEL (familial erythrophagoctyic lymphohistiocytosis) which is now known as HLH (Hemophagocytic lymphohistiocytosis) and told us that this is what they believed Tyler had.
The doctors informed us that there was no treatment and there was nothing to do except to wait for her heart to fail. We chose to take Tyler home to be with her family.
Tyler died at home 1 1/2 days after she came home.
We went through genetic counseling and were told that it was just a virus, and we would have no other issues having children in the future.
If you'd like to make a donation to this event in honor of Tyler, please click on the donate button below. Thank you.