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.
Jamie and Brad were told that HLH had attacked Tyler’s spleen, liver, kidneys, heart, central nervous system and skin. Tyler continued to fight for his life over the next several weeks. They stayed at his bedside the entire time. Their infant son, Cameron, was cared for by family members who brought him to the hospital daily so Jamie could breastfeed him while never leaving Tyler’s hospital room.
Jamie and Brad were told that since Tyler’s HLH was genetic in origin, the only cure was a bone marrow transplant.
It was decided that Jamie would travel with Tyler to Cincinnati Children’s Hospital Medical Center for the transplant, and in October 2011 once they realized what they were facing financially, Jamie and Brad reached out to the Children’s Organ Transplant Association (COTA) for assistance and support. On Dec. 1, 2011, Jamie and Tyler flew to Cincinnati to start the bone marrow transplant process more than 1,000 miles from their home, while Brad stayed behind in Rhode Island to keep working and to keep some normalcy in Cameron’s daily routine.
According to Jamie, “When Tyler and I left for Cincinnati Children’s we were leaving our life and family behind on this journey of the unknown. It was extremely hard leaving behind my nine-month-old baby and my husband, but it was the only choice we had … to save Tyler’s life.”
Tyler received his bone marrow transplant on January 4, 2012, and both he and his mom remained in Cincinnati for 200 days. According to Jamie, these were long and exhausting days and many times she felt ready to give up and lose hope. But Tyler kept exceeding the doctors’ expectations, which would strengthen her resolve to fight for him at his bedside.
Being part of the COTA family also gave both Jamie and Brad hope as well.
According to Jamie and Brad, “COTA has provided, and continues to provide, hope and security for our family during this trying time. Since Jamie needed to stay at home with our two sons during Tyler’s transplant journey, we have depleted most of our savings over the past several years. COTA has definitely helped alleviate the stress of house payments and daily living expenses while Tyler and Jamie were at transplant. We are very grateful.”
When asked where she found her strength during these long days of hospitalization, Jamie said, “After receiving his bone marrow transplant, Tyler experienced a very high fever and terrible rash for 47 days. The medical team had very few answers, but I was determined to return to our home once the fever broke, which it did on June 11th. By June 19th we were on our way home. A true miracle for our family.”
Tyler’s transplant journey continues to have obstacles. Tyler has had many ups and downs since receiving his transplant, but according to his parents one thing has never changed … his fight to survive.
Keep Fighting, Tyler … Team COTA is cheering for you!
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email firstname.lastname@example.org.
– Daily News