Our son, Tyler Mason Peryea, born on December 28, 2009 was an extremely easy, happy, energetic and loving child. Despite many food allergies, he continued to grow and reach all milestones. Tyler loved being read to and loved dancing to Barney. He was perfect!
...Until May 18, 2011... one of the worst days of our lives. Tyler, just shy of 16 months old, stopped eating and had his first fever and rash. We brought him to the pediatrician, and over the next six
days, he had a battery of tests, but was not recovering with antibiotics. Tyler was admitted to Hasbro Children's Hospital on day seven and was rushed to the ICU the next day. His condition became so severe that he was put on a ventilator. Finally his illness was diagnosed as HLH, Hemophagocyctic Lymphohistiocytosis. Thank goodness the doctors had even heard of such a rare disease!
HLH attacked all of Tyler's organs, but he continued to fight for his life. Tyler was on life support for several weeks and we learned he would need a Bone Marrow transplant. We decided to bring Tyler to Ohio for his transplant. Little did we know that I would be in the hospital for eight long months.
During Tyler's hospitalization, both in Ohio and at Hasbro Children's Hospital, The Tomorrow Fund gave us a daily stipend to help offset the cost of food and travel expenses. The Tomorrow Fund provided additional financial support by paying our household bills including mortgage, utilities, etc.
It was such a relief to know that this wonderful organization would help our family at this critical time.
After Ohio, Tyler spent several weeks in ICU at Hasbro Children's Hospital. When discharged, he started his outpatient treatment at The Tomorrow Fund Clinic. We were concerned about handling his IV medications at home. The team of doctors and nurses immediately made us feel comfortable. We knew we would have help with Tyler's long battle to recovery. I can still remember the first day of outpatient therapy and walking into The Tomorrow Fund Clinic. Tyler, his baby brother Cameron and I were greeted by so many smiling faces. We knew from that day we were not alone and that The Tomorrow Fund would be there to support our family.
We cannot express the gratitude we have for The Tomorrow Fund and the medical staff in The Tomorrow Fund Clinic. We are so thankful for the on-going support: Everyone has become part of our family.
Tyler is still going to Clinic 1-2 times weekly and is getting stronger every day. This past summer, Tyler and Cameron attended Camp Dotty, a summer Camp on the hospital grounds sponsored by The Tomorrow Fund. It was the best week knowing my children were cared for and having fun. We are so fortunate to have The Tomorrow Fund Clinic and the invaluable financial and emotional support of The Tomorrow Fund for the past 41/2 years. We are forever grateful to this amazing organization!
Tyler started kindergarten this year, but still has a long journey ahead!
Jamie and Brad Peryea