Hi, my name is Nancy, but this story is not my own; it is his story... You see, in June, while doing routine blood work, my husband's results showed low platelets. He was admitted to the hospital where he became critically ill. His spleen was damaged, and he underwent two dangerous surgeries to remove it. He was hospitalized for 35 days while doctors tried to figure out what caused it. His spleen was sent to a lab in Boston, where our nightmare was realized... "Randy" was diagnosed with a fatal disease known as HLH.

This disease is extremely rare, and most medical professionals aren't even aware of its existence. Research on the disease has been very limited. In fact, there are no real totals on fatalities as so many cases are misdiagnosed until it's too late. What is HLH? It's an overactive immune response in the bone marrow where our blood cells are produced. Some are born with the disease; others acquire it later in life. As if having this disease isn't bad enough, it is triggered by either a form of cancer or an autoimmune disease. For Randy, he has another rare autoimmune disease known as FMF. It took genetic testing to figure this out, and like many others, Randy had become critically ill before his results came back.

On November 11, 2025, this very evil disease quickly took over my husband's body and shut down several of his organs. Thankfully, we have a good medical team who quickly put him on a ventilator and dialysis. With several go-rounds between the hospital and insurance company, the medicine he needed was brought in. God willing, he will return to us to continue to fight this ugly demon.

I have spent countless hours online speaking with others who have lost loved ones to this disease, and we all want one thing to come out of the losses: education.

In the meantime, I am asking and praying for the help of others. Randy has been unable to work for a while now, and I am a preschool teacher. With him being on the ventilator in the ICU, the chemo he received has left him immunocompromised. He can't protect himself from sicknesses. This also means I can no longer work as well. For now, it is important that I be his eyes and ears, as any decision could provide this horrible disease another opportunity to take him out.

Being away from home has been exhausting, but the cost of travel is impossible without help.

Thank you for taking the time to read this, and may God bless you in return.