BLOOMINGTON – January is a big month for COTA’s Peryea family of Cumberland, Rhode Island.
Just a few days ago, they celebrated the two-year transplant anniversary of their son, Tyler, and were able to reflect on the emotional and stressful transplant journey they continue to travel.
Tyler Mason Peryea was born Dec. 28, 2009. According to his parents, Jamie and Brad, Tyler was an extremely easy, happy, energetic and loving baby. Although he had many food allergies, his growth was on track. They remember how much he loved fruits and vegetables and still think about this baby boy who ate collard greens in his high chair. Tyler loved being read to and he loved dancing to Barney songs.
Jamie and Brad remember these days and smile. On March 22, 2011, Tyler’s baby brother, Cameron, was born and according to them, “Our family was complete.”
In May 2011, Tyler stopped eating, was extremely lethargic, had his very first fever, developed a skin rash and was in great discomfort. Unsure what was going on, Jamie rushed him to the pediatrician’s office where he was diagnosed with strep throat. Tyler was put on an antibiotic, but showed no signs of getting better. After six days of continual tests and misdiagnoses, Tyler was admitted to the hospital where the infectious disease team evaluated him. “Little did we know that our once perfect family would never be the same again,” Jamie remembers.
Tyler continued to deteriorate quickly. Numerous tests were done and various specialists were consulted. His condition became so severe that he was eventually intubated and remained on a breathing tube for almost four weeks. After numerous tests were completed, Tyler was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). HLH is a rare immune disorder that usually affects infants and young children. The disease strikes approximately one in a million children worldwide. While the exact cause is unknown, it is thought to be caused by a disorder of immune system regulation. If not diagnosed and treated quickly, death usually occurs within two months due to organ failure.