CASA GRANDE, AZ (3TV/CBS 5) -- Casa Grande firefighter Kyle Wright and his wife Madison, a registered nurse were always accustomed to being in and out of hospitals for their line of work.

But over the past couple of years, those hospital visits have become more frequent and more personal.

In August of 2016, genetic testing revealed their then toddler son Eli has a rare illness called fanconi anemia.

"He has always had medical issues since he was born, but we never knew why," said Wright.

Doctors left Kyle and Madison with more questions than answers.

"The geneticist didn't know much about it, so he gave us a couple of sheets he printed out of a medical book, and essentially said good luck. The limited information we had was Eli will get cancer, leukemia, or both, most likely between the ages of five and seven," said Wright.

After doing their own research, Kyle and Madison found three centers in the United States that specialize in fanconi anemia patients. They were accepted into Cincinnati Children's Hospital that month.

Since then, they've been traveling to Cincinnati every three to six months. Each time, Eli, who is now five years old, endures bone marrow biopsies, abdominal ultrasounds and brain MRIs. He also gets a monthly blood draw that is sent back to Cincinnati.

According to Kyle, Eli's strand of fanconi anemia is aggressive.

"With the other forms of FA, the signs and symptoms of bone marrow failure usually present themselves slowly. Doctors are able to tell when it might be time to perform a bone marrow transplant. With Eli, it can change with the drop of a hat," said Wright. "We have already toured the transplant floor and are approved to go to transplant whenever we want or choose."

If and when Eli has a transplant, Kyle says he will be at the hospital for about three months. There are also risks.

"There is no guarantee he will make it through. If he does make it, then the chance of developing leukemia is almost erased. Then what we would have to worry about is when the cancer will show up. The kicker is, it's about 50/50 on what comes first, leukemia or cancer. We could do a bone marrow transplant just for him to get cancer right after," said Wright.

In light of the costly medical bills and travel, Eli's grandpa, Steve Ketsdeve, has organized a charity golf tournament.

"Tee it up for Eli" will take place on Jan. 19 at Arizona City Golf Course, located at 13939 Cleator Road in Arizona City.

Shotgun start is 9 a.m. To play, the family is accepting donations of $50 per person, or $180 per foursome.

There will also be raffles and a lunch buffet. All the proceeds raised will go to Eli's treatments, surgeries and travel. To register, contact Steve Ketsdever at 520-858-5678 or Kyle Wright at 520-560-3180.

 


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