Ryan White Voices
Ryan White Voices: A Legacy of Care
Curtis: The Road From Here
Darlene: Lord Protect Me
José: Mucho Orgullo
Darlene: Moving Forward
Living With HIV: Positive Voices
The ACA and the Ryan White HIV/AIDS Program
Jeanne White-Ginder: Transcript for “The Nightmare Begins”
Ryan was diagnosed with AIDS in 1984. Well let me back up a minute, first of all he was born with hemophilia. And uh, he was circumcised and after they circumcised him he bled for about three days and they kept putting stitches in him, and ointments, and you know, all kinds of things and it never got any better. So finally they realized that he had a bleeding problem they thought. Hemophilia had never been in our family before so we were never aware of, you know, to watch for it or anything. So, he was transferred to the hospital in Indianapolis and hematologists called me and told me that Ryan had severe hemophilia. He had less than one percent clotting. They said he could never have any major surgeries, they said he’d never be able to play contact sports. They said, you know, the average hemophiliac was crippled by the time they were twelve years old. Then he told me he said, “Well that was the bad news, now I want to tell you some good news.”
He said, “We have this new drug, that’s not approved by the Food and Drug Administration yet, but it’s called Factor 8, which contains the clotting agent found in blood.”
He said, "We would like permission to give it to your son.”
Of course I gave him permission to use it and it was a godsend, it really was. I mean, for the first years of Ryan’s life, I mean he was in and out of the hospital all the time cause you had to get it in the hospital; Factor 8. When he was three years old they put him on a protocol, because he was so severe, that would enable him to get it at the doctor’s office twice-a-week, that would be just kind of as a, as a maintenance. So we thought, oh my gosh that’s really gonna be really nice you know. Then when he was five they asked me if I would like to learn how to give it at home. And I thought, oh my gosh this is even gonna make our life easier.
Well when he was nine years old of course he, he wanted to play little league so bad. He said, “Mom,” he said, “everybody plays little league.” He goes, “Can I please, please, please, please, please play little league?”
Well he wasn’t any good, but he felt so proud because at least he was on a team, you know, like all the other kids were. From a very early age he’d say, “Mom, I’m just thankful all that’s wrong with me is my hemophilia.”
So, I think when he got AIDS I think that was just something else he felt like that he and to deal with and that he could deal with it.
Our nightmare began though um when he was twelve. He was sick that whole year in 1984. I kept taking him to the doctor and they kept saying, well, there’s a lot of colds and flu going around and they put him antibiotics and it seemed like he got better. We went to hemophilia clinic at the end of November in 1984, which hemophiliacs do once a year. They see a bone specialist, they see a dentist, they see, you know, just a whole variety of doctors. They’re evaluated and so forth. And I get a call the first of December that said, “Are you aware Ryan has had hepatitis within the last year?”
And I thought, well that’s why he’s been so sick. You know, I thought, gosh, at least that explains why he’s been so sick. Well, my nightmare was just beginning.
Ryan turned thirteen on December the sixth and, uh, we had a big birthday party for him like most kids do when they turn thirteen. And it was just a couple days after that he got off the school bus, he come in the house, and he said, “Mom, you gotta do something.” He said, “I can’t even get off the school bus without being tired.”
He said, “We had to run a lap today at school mom and the teachers got real upset because I couldn’t finish.” He said, “Mom, I don’t know what’s wrong with me, but something’s wrong with me.”
A couple days later all of a sudden the high fever started. He started running these 103-104 fevers, I mean really high just all of a sudden. They put him in the hospital and they diagnosed him with pneumonia in both lungs. They, um, kept coming in and pounding on his chest and saying, “Ryan, you’ve got to cough that stuff up. If you want to get out of this hospital you’ve got to cough that stuff up.”
Ryan, just totally exhausted, said, “Mom, why won’t they listen to me?” He said, “There’s nothing down there to cough up.”
When he was on almost 100 percent oxygen they decided to transfer him to Riley Hospital For Children. They transferred him to Indianapolis in an ambulance, and the infectious disease doctor met me in an emergency room and he said, “We feel Ryan has TB cancer or possibly AIDS.”