A brave father is spreading awareness after a rare ailment forced him to have his nose removed, leaving his body so vulnerable that a simple sneeze might be fatal.
Brandon Boothby, 31, of Florida, got the unusual illness unexpectedly, making his body sensitive to otherwise ‘harmless’ viruses and germs like those found in sneezes. As a result, he developed a fungal infection in his nose, which began to consume his flesh.
The illness was only weeks away from reaching his brain and eyes, so the fireman had no alternative but to have his nose removed. Brandon first experienced flu-like symptoms, which worsened over time.
Brandon became so weak that he fainted, which led him to the emergency department, where he learned about his unusual ailment, severe aplastic anemia. Brandon went on to say: “It’s such a severe autoimmune disease that if someone sneezes around you, you could get a fatal infection.”
After learning about his uncommon illness, in which his body stopped manufacturing new blood cells, the race was on to locate him a life-saving bone marrow transplant. Meanwhile, he required daily blood transfusions merely to maintain a “survivable level”.
Brandon was successfully matched with a donor, but his suffering did not end there. Following the transplant, the generally healthy father developed graft versus host syndrome. This indicated that the new, healthy blood cells were fighting his own body.
Brandon developed eczema-like symptoms and inflammation of his organs as a result. Because of the strong response, he faced having part of his bowel removed by colostomy.
Fortunately, because he was fit previously, physicians opted to help him recuperate naturally, which did. After a year and a half, he is recounting his tale to raise awareness about the illness.
After nearly dying, he learned to appreciate each day. Brandon explained: “It’s an autoimmune illness that makes you extremely sensitive to normally innocuous viruses and germs, such as dirt beneath your fingernails.
“When I had a fungal infection in my nose, it started eating and destroying tissue and spread further and farther back; if I hadn’t had it entirely removed, it would have reached my eyes in a few weeks and my brain in a month.
“Our systems fight off a variety of germs and infections that we are unaware of, but when your neutrophil count is low or non-existent, those things become devastating. The only method to stop the fungal infection I had was to fully remove it.
“There is a substantial death rate among aplastic anemia patients. I was quite lucky in terms of my age and health. If you’re 35 or younger and healthy, you’re moved to the top of the list. They seek the most viable candidates so that the transplants are not ineffective.
It wasn’t difficult to breathe when my nose became infected; it was the local discomfort and swelling that was concerning. When I chronicled what was happening to me, I had no clue I’d lose a portion of my face.”
“So, before the transplant, I was probably receiving two to three blood transfusions each day, which placed me on a subprime level to keep going. I was severely malnourished after the transplant and developed graft versus host syndrome.
“I was able to recuperate on my own when doctors placed a central line in my chest to give me liquid nutrition, relieving the effort of digesting meals from my inflamed lower intestines. They warned me it may take up to three years to fully recover, but it’s been nearly two years and things are doing great. While I still need to attend to monthly checks, I’ve returned to full-time work as a fireman.
“Now I wake up with a completely new perspective. I am far more grateful to God for simply giving me another chance at life. I appreciate everything, even if it is as simple as stepping outdoors and enjoying the weather or spending time with my kid.
“I saw life slip away from me, and it was eye-opening to realize how much I had previously taken for granted. My objective today is to increase awareness because this is such a rare condition, but owing to recent research, the fatality rate is decreasing.”