Jimbo Fisher, coach of the top-ranked team Florida State University, is looking forward to the national championship game on Monday night, but he already has another victory to be proud of, reports Florida Today.  Jimbo and his wife Candi established the Kidz1stFund in 2011 after finding out that their youngest son, Ethan, suffered from Fanconi anemia.

The fund primarily focuses on raising money for research by the University of Minnesota Fanconi Anemia Comprehensive Care Clinic.  In each of the first two years, the fund raised half a million for the clinic.  This year, they broke their records and goals and raised $800,000.  It was a huge success that shattered their previous expectations.  Candi said Kidz1stFund has one full-time employee and one part-time employee and that 90 cents of every dollar donated is sent directly to Minnesota for research.  According to Ethan’s personal physician, the money is significant for achieving progress on fighting this disease.

Fanconi anemia is a rare inherited bone marrow failure syndrome (IBMF), reports Medscape.  Of the rare IBMFs, Fanconi anemia is the most common.  This disease often leads to the development of cancer.  Also, 75 percent of individuals with Fanconi anemia have birth defects.  Fanconi anemia can also result in liver tumors, hemorrhages, myelodysplastic syndrome, and infections.  The National Cancer Institute points out that, in one-fourth of those diagnoses with Fanconi anemia, there are no physical effects.  Some people born with Fanconi anemia go undiagnosed until after the age of 50.

Earlier this year, National Monitor reported on the story of Logan Stevenson, the terminally ill boy suffering from Fanconi anemia and acute myeloid leukemia.  Logan served as the best man at his parents’ wedding and passed away days later in his mother’s arms.  Logan died just two months before his third birthday, but had suffered through a series of operations, including a stem cell transplant.

Ethan has been more fortunate than Logan.  At present, the average life expectancy for patients with Fanconi anemia is 33 years, with extremes above and below that.  Ethan is currently 8 years old and has not yet needed a transplant.  Of course, every child born with Fanconi anemia will eventually need hematopoietic cell transplantation to replace the patient’s abnormal stem cells with normal stem cells.  So, a transplant will be coming some day, but it is unclear at what point in his life Ethan will have to go through that.