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Taylor's Journey
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THE TAYLOR MICHELLE RUSSELL STORY: A JOURNEY TO HEAVEN.
Tuesday, January 19, 2010 at 5:19am Taylor Michelle Russell, my Big Girl went on home to be with God. She fought the good fight & taught us all so much while touching so many lives. Tay Tay taught me the true meaning of FAITH, FIGHT & NOT TO COMPLAIN!
Thank you all for your prayers & support. Please continue to pray for me & our family. I loved her, but God loved her more! Tay will live on in our hearts forever! I love you all more than you'll ever know! Melanie, Tay Tay's Momma THE FIGHT WITHIN TAY TAY.
Taylor Michelle Russell, affectionately called Tay Tay, was an intelligent, fun-loving , fiesty 4-year-old in Chicago who in June 2008, was diagnosed with Juvenile Rheumatoid Arthritis (JRA), which would prove later to be a misdiagnosis. In October 2008, she was hospitalized for 9 days with high fevers higher than 104 ° and elevated liver enzymes above the norm for children.
After several tests and much uncertainty, Tay Tay was given a clinical diagnosis of Macrophage Activation Syndrome (MAS) ~ a severe life-threatening, complication of several chronic rheumatic diseases of childhood. She was placed on the steroidal treatment of Prednisone, which did not alleviate the risk AND caused her to experience emotional and physical changes. After receiving this treatment, Tay Tay showed some signs of improvement… or so the doctors thought and she was subsequently released from the hospital.
On New Year’s Eve 2008, Taylor’s fevers returned even higher at 105.7°. Immediately hospitalized, realizing that steroid suppression along would not keep Taylor alive, Doctors added Cyclosporine to her prescription regime.
In July 2009, after a year of seeking multiple second opinions, Taylor was referred to a Hematologist/Oncologist, who consulted with doctors in Cincinnati, OH and Minneapolis, MN and was finally diagnosed with the secondary form of MAS known as Hemophagocytic Lymphohistiocytosis (HLH). HLH is an extremely rare disorder of the immune system primarily affecting infants and young children which can occur on the basis of a genetic defect. The prevalence of HLH is 1 in every 1,000,000 children under the age of 15.
The only known cure for HLH is blood or marrow transplantation. For this procedure, high doses of chemotherapy are given to destroy the patient’s bone marrow, the source of the abnormal immune system cells. Although Taylor was on a rigorous medicine regime which seemed to control the disease, doctors advised that a Bone Marrow Transplant (BMT) would be her only means of survival.
In the end, Taylor fought the good fight of faith and taught us all the importance of life at such a young age. We will miss you truly Tay Tay.
Tuesday, January 19, 2010 at 5:19am Taylor Michelle Russell, my Big Girl went on home to be with God. She fought the good fight & taught us all so much while touching so many lives. Tay Tay taught me the true meaning of FAITH, FIGHT & NOT TO COMPLAIN!
Thank you all for your prayers & support. Please continue to pray for me & our family. I loved her, but God loved her more! Tay will live on in our hearts forever! I love you all more than you'll ever know! Melanie, Tay Tay's Momma THE FIGHT WITHIN TAY TAY.
Taylor Michelle Russell, affectionately called Tay Tay, was an intelligent, fun-loving , fiesty 4-year-old in Chicago who in June 2008, was diagnosed with Juvenile Rheumatoid Arthritis (JRA), which would prove later to be a misdiagnosis. In October 2008, she was hospitalized for 9 days with high fevers higher than 104 ° and elevated liver enzymes above the norm for children.
After several tests and much uncertainty, Tay Tay was given a clinical diagnosis of Macrophage Activation Syndrome (MAS) ~ a severe life-threatening, complication of several chronic rheumatic diseases of childhood. She was placed on the steroidal treatment of Prednisone, which did not alleviate the risk AND caused her to experience emotional and physical changes. After receiving this treatment, Tay Tay showed some signs of improvement… or so the doctors thought and she was subsequently released from the hospital.
On New Year’s Eve 2008, Taylor’s fevers returned even higher at 105.7°. Immediately hospitalized, realizing that steroid suppression along would not keep Taylor alive, Doctors added Cyclosporine to her prescription regime.
In July 2009, after a year of seeking multiple second opinions, Taylor was referred to a Hematologist/Oncologist, who consulted with doctors in Cincinnati, OH and Minneapolis, MN and was finally diagnosed with the secondary form of MAS known as Hemophagocytic Lymphohistiocytosis (HLH). HLH is an extremely rare disorder of the immune system primarily affecting infants and young children which can occur on the basis of a genetic defect. The prevalence of HLH is 1 in every 1,000,000 children under the age of 15.
The only known cure for HLH is blood or marrow transplantation. For this procedure, high doses of chemotherapy are given to destroy the patient’s bone marrow, the source of the abnormal immune system cells. Although Taylor was on a rigorous medicine regime which seemed to control the disease, doctors advised that a Bone Marrow Transplant (BMT) would be her only means of survival.
In the end, Taylor fought the good fight of faith and taught us all the importance of life at such a young age. We will miss you truly Tay Tay.
Due to Taylor's extensive care, we experienced very high costs related to surgery and other medical expenses, estimated to exceed $1 million. Please help and please donate!!!
