About Tyler Mason Peryea
Tyler Mason Peryea was born on December 28, 2009. He was an extremely easy, happy, energetic and loving child. Although he had many food allergies, he continued to grow beautifully. We adjusted what he could eat, but he always loved his fruits and vegetables. Did you ever hear of a baby who ate collard greens? He loved being read to, and he loved dancing to Barney. He enjoyed spending two hours a day at a local daycare. His baby brother Cameron was born on March 22, 2011, and our family was complete.
On May 18th, just shy of sixteen months old, Tyler stopped eating, was extremely lethargic, had his very first fever, developed a skin rash and was in great discomfort. I rushed him to the pediatrician’s office, and he was diagnosed with strep throat. He was put on an antibiotic, but showed no signs of getting better. After six days of continual tests and misdiagnosis, Tyler was admitted to the hospital where the infectious disease team was called in to evaluate him. Little did we know that our once-perfect family would never be the same!
Tyler continued to deteriorate quickly. The doctors diagnosed him with atypical Kawasaki’s Disease and were going to treat him with IVIG. He was rushed to the Pediatric Intensive Care Unit the next day. The attending doctor was not convinced it was Kawasaki’s. She was determined to figure out what was wrong with Tyler. He underwent various diagnostic testing including an echocardiogram, ultrasounds, a lumbar puncture, and a bone marrow biopsy. His condition became so severe that he was immediately intubated and remained on the breathing tube for almost four weeks. After all of the testing, Tyler was finally diagnosed with hemophagocytic lymphohistiocytosis (HLH). Thank goodness that the doctors had even heard of such a rare disease!
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 which leads to the activation of infection fighting cells called histiocytes and lymphocytes. These cells normally travel throughout the body and destroy foreign material and fight infections. However, patients with HLH have too many of these activated histiocytes; these cells begin to accumulate in normal tissue causing inflammation and damaging a variety of organs. If not diagnosed and treated quickly, death usually occurs within two months due to organ failure.
HLH had attacked Tyler’s spleen, liver, kidneys, heart, central nervous system and skin. The echocardiogram showed Tyler had severe cardiac failure, and the doctors thought they would have to remove his spleen - an operation that he would never have been able to survive. The surgical team performed an emergency procedure to expel the fluid in his abdomen which allowed his liver and kidneys the necessary room to continue functioning. It was the worst Saturday night of our lives!
Tyler continued to fight for his life over the next several weeks. He refused to allow the HLH to win the battle. Due to his continual pain and major organ failure, Tyler was sedated for several weeks. Every day was an emotional rollercoaster for all of us with more downs than ups. The prayers of family and friends helped us stay strong for our little Tyler. People prayed for his recovery in groups spanning the country. His father and I stayed at Tyler’s bedside for the entire time he was in the hospital. Our infant son Cameron was continually cared for by loving family members and was brought to the hospital daily so that I was able to continue breast feeding. We do not know what we would have done without the continued support of our family.
The normal treatment for HLH is chemotherapy, immunosuppressants, and high dose steroids for eight weeks. Tyler was also given intralthecal chemotherapy with lumbar punctures several times. In Tyler’s case, the disease is genetic in origin and the only cure is a bone marrow transplant. Fortunately, our younger son was tested and he does not carry this rare genetic mutation. Thankfully, Tyler started on the HLH94 protocol on the day of diagnosis. The doctors were hopeful that Tyler would respond to the treatment and show signs of remission, but by the middle of August, his blood work showed signs that the HLH was still very active. The doctors restarted the protocol and we are hopeful that this treatment will keep the HLH at bay until his bone marrow donor is found.
Since May, Tyler, who is now 21 months old, has been fighting a very tough battle against HLH. He has been in and out of the hospital for over thirteen weeks. The next step for our family is relocating to Cincinnati where Tyler will be receiving an allogeneic bone marrow transplant at Cincinnati Children’s Hospital, the only hospital in the United States that treats childhood HLH. Although the hospital is more than 1000 miles from home, we have decided that this is the best place for Tyler’s transplant. He will be treated by Dr. Lisa Filipovich, the world’s leading expert in the disease.
We are hopeful that the transplant will go smoothly without complications. Tyler will remain in hospital isolation for a minimum of 100 days and will possibly need to remain near the hospital for six months or more. The next year promises to be extremely difficult for our family but will be well worth it. We are certain that Tyler will remain strong during this ordeal, and we are all hoping for a complete recovery. He has endured so much at such a young age, and, hopefully, this will make him a stronger person.
Thank you for reading Tyler’s story and for considering a donation to the Children’s Organ Transplant Association. Please keep Tyler in your thoughts and prayers.