MINNEAPOLIS (FOX 9) - Fanconi Anemia is a rare disease that affects about one in 130,000 children and the end result is failure of one’s bone marrow.
Generally, says Dr. Margaret MacMillan, a professor of Pediatrics at M Health Fairview University of Minnesota Masonic Children’s Hospital, the symptoms arise around ages 7-10.
Jimbo Fisher hugs his son Ethan Fisher. Ethan is a patient of M Health Fairview University of Minnesota Masonic Children's Hospital.
“And children will be tired because their hemoglobin is low, or they might bruise very easily, or bleed easily because their platelet count is low,” said MacMillan. “And sometimes, they have really serious infectious because their white count cell is low.”
A diagnosis of Fanconi Anemia requires expert, world class care like that of M Health Fairview University of Minnesota Masonic Children’s Hospital.
If your child is sick with FA, you want MacMillan leading what will undoubtedly be very complicated medical care.
“Through the research, we’ve come a long way, but we still have a ways to go,” said MacMillan. “15-20 years ago, the success rate was only 25 percent. Now, it’s over 90 percent. So, we’ve been able to get the children and adults with Fanconi Anemia, the vast majority of them, we can get them through transplant. But it’s a hard journey. We have to be able to do it safer and do it with less complications and ultimately do it without.”
Advancing the care, with the goal of successful gene therapy treatment for FA patients, means more research, which requires generous funding.
The hospital and its patients afflicted with the disorder are getting a big boost from a family known more for football than medicine.
M Health Fairview University of Minnesota Masonic Children's Hospital
When Texas A&M Head Coach Jimbo Fisher sought care for his young son Ethan Fisher, who has FA, they came to the Minneapolis hospital.
“In that first visit, when they’re trying to get their head around with Fanconi Anemia, what does it mean for their son Ethan, they immediately said we want to help with research, we want to be a part of it,” said MacMillan. “In fact, we had to re-direct them to say the purpose of our first meeting is to discuss their son, but because of the importance of research and how it gave them hope, they immediately latched on to it and started Kidz 1st Fund.”
Kidz 1st Fund gives every cent raised to the hospital for FA research. Over the last nine years, they’ve raised over $10 million.
Through regular trips to Minneapolis, patients like Ethan Fisher are doing more than just surviving; they’re thriving.
With more funding and more research, even more patients and parents will leave this hospital with hope.
“To be able to say to them, there’s hope for you and your child is one of the most rewarding things that I can do,” MacMillan said. “It also fuels my desire to do the research.”
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