Fanconi Anemia (FA) is a largely misunderstood and currently incurable genetic blood disease, affecting one out of every 131,000 births annually. Some of the disease’s early symptoms are vague and may be misdiagnosed as something as common as the flu.
Florida State University’s head coach, Jimbo Fisher, and his wife, Candi, spent the last several years becoming highly acquainted with the rare blood disease after their youngest son, Ethan, was diagnosed with FA about four years ago at the age of five.
The diagnosis for the Fisher family is a parent’s worse nightmare - an almost certainty that the parent will outlive their child. Fear of death and the unknown, as well as guilt, can stop many people in their tracks, unable to move forward and live a full life with whatever time God gives them.
Some of the Fishers’ guilt stemmed from the fact that FA is a genetic disorder and Ethan received the recessive gene …show more content…
(Margaret) MacMillan. She said that Ethan is healthy and, at the time, there was still three to five years before he would need surgery. There was nothing physically to do. She also said ‘Don’t put him in a bubble. With modifications, let him be a little boy.’”
The Fishers’ work with University of Minnesota and Dr. MacMillan began when Ethan was referred there.
Dr. MacMillan, Ethan’s primary FA care provider, has spent 18 years at Minnesota working with FA and bone marrow transplants. She is currently an Associate Professor of Pediatrics in the Division of Blood and Marrow Transplantation and is the Clinical Medical Director of the Pediatric BMT Program and Medical Director of the Pediatric BMT Unit at the University of Minnesota. Dr. MacMillan is also the Co‐Director of the University of Minnesota Fanconi Anemia Comprehensive Care Clinic, which follows the largest number of Fanconi anemia patients in the world.
FA and bone marrow transplants are tied together due to the need that FA patients will need the transplant to
Florida State University’s head coach, Jimbo Fisher, and his wife, Candi, spent the last several years becoming highly acquainted with the rare blood disease after their youngest son, Ethan, was diagnosed with FA about four years ago at the age of five.
The diagnosis for the Fisher family is a parent’s worse nightmare - an almost certainty that the parent will outlive their child. Fear of death and the unknown, as well as guilt, can stop many people in their tracks, unable to move forward and live a full life with whatever time God gives them.
Some of the Fishers’ guilt stemmed from the fact that FA is a genetic disorder and Ethan received the recessive gene …show more content…
(Margaret) MacMillan. She said that Ethan is healthy and, at the time, there was still three to five years before he would need surgery. There was nothing physically to do. She also said ‘Don’t put him in a bubble. With modifications, let him be a little boy.’”
The Fishers’ work with University of Minnesota and Dr. MacMillan began when Ethan was referred there.
Dr. MacMillan, Ethan’s primary FA care provider, has spent 18 years at Minnesota working with FA and bone marrow transplants. She is currently an Associate Professor of Pediatrics in the Division of Blood and Marrow Transplantation and is the Clinical Medical Director of the Pediatric BMT Program and Medical Director of the Pediatric BMT Unit at the University of Minnesota. Dr. MacMillan is also the Co‐Director of the University of Minnesota Fanconi Anemia Comprehensive Care Clinic, which follows the largest number of Fanconi anemia patients in the world.
FA and bone marrow transplants are tied together due to the need that FA patients will need the transplant to