“That was a low point,” says Roark. “I had always been healthy. Very healthy.” And now, even if she survived, she was looking at a life where she was “too tired even to sit in a chair.”
One of the worst symptoms she faced was “PNH flu”—fever, nausea and diarrhea. “It’s just like the flu, except the flu goes away,” she says.
The holidays, in particular, brought a stark reminder of how sick she had become. “There are 18 of us, and they would all come to our home. And before I got sick, I did everything.” She would decorate indoors and out, hanging garlands and lights. Then she’d whip up a big meal—turkey, potatoes, dressing, desserts, the works—and wait. “I wanted everything to be prepared so that when my family arrived, we could talk and play games. I loved playing with the grandkids.” She’d cuddle the babies and roll around on the floor with the younger ones. “I relished those times.”
But once PNH struck, she could no longer cook for her brood. Or hang the holiday decorations. “I was stuck in the bedroom, going from the bed to the bathroom. All I wanted was to be out there with them, around the tree, at the dinner table,” she recalls. “But my body wouldn’t allow it.”
At first, her grandchildren would inquire, Where’s Nana? Isn’t she coming to eat? Doesn’t she want to be here when we open the presents? But soon enough, they stopped asking. “They knew I was in bed.” Sometimes, they would come and stand at the bedroom door. “I was so sick, I was throwing up and feverish. I couldn’t even tell them to come give me a hug, couldn’t read them a book.”
They would come for only a day or two, so Roark did her best to put on a happy face for the children. “I would try to get up and clean up, to sit with them for a bit. It was so hard, but it was important to me. Because I didn’t want their memories of me to be an old woman sick in bed.”
To stabilize her hemoglobin levels as the disease progressed, Roark received blood transfusions every few weeks. Doctors put her on cyclosporine and steroids to curb her immune system and, thus, reduce the rate of blood-cell destruction. As if the disease itself weren’t enough, these treatments came with side effects—insomnia, mood swings, weight gain, fluid retention. Before long, says Roark, “I’d forgotten what it was like to feel good.”
What she didn’t know was that she would one day remember that feeling. And the discovery that would make it possible would come from just up I-40, from the labs of OMRF.