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 “Proving Them Wrong”
I kept saying, you know, how could Ryan have, have AIDS? You know, and they said well from his [Factor 8] used to treat his hemophilia. He said we’re just starting to see some cases. I just thought they’re all wrong. I thought, how could my son be one of the first children, the first hemophiliacs. I thought, you know, why didn’t we hear of others? In 1985 they started bringing in all hemophiliacs and found out that 80 percent of them was all HIV infected. So it was just kind of the tip of the iceberg for a lot of the families that were dealing with hemophilia.
The CDC shows up at the hospital, and it was very scary and I said you know this is really scaring me. We’re a really affectionate family. I said we hug, we kiss, we share drinks. And they assured me then, back in 1984, that no family member had ever come down with AIDS, so I had nothing to worry about. So I kind of thought, well maybe, you know, maybe everybody knows more about this disease than I do. But I soon found out that nobody did.
I started seeing the gowns and the gloves and the masks all appearing, you know, outside Ryan’s door. I seen all the quarantine signs of “All Lab People Must Check In,” you know. Andrea and I were down in the canteen—my daughter Andrea was down in the canteen area of the hospital—and we heard this woman. She says, “I’m not going in that kid’s room, and you’re not going to make me.”
I turned around, and it was the surgeon who’d done the surgery on Ryan, him and his assistant. I asked Dr. Kleiman how long he might have and he said, “Well…”
Ryan only had a T-Cell count of 25, which was really not good. He [Dr. Kleiman] said, “That maybe three to six months, if we can get him over what he has now.”
And I’m just like, oh my god, you’re not going to tell me that. I mean, that’s the worst news that anybody could ever hear. I mean, that’s like, no. The only thing I could remember about AIDS at the time was that everybody I saw on T.V. or anything was like wasted away, they were, like, on their deathbed.
It was really hard. I just, I just felt like somehow, someway, if I pray hard enough somehow I felt like everything was gonna turn around. You know, I thought, if this is so new, why can’t they be wrong? But then I think it just gradually sinks in. You don’t want it to, but it does.
I told Dr. Kleiman, I said, “I want all these tests run all over again.”
And he said,“ Jeanne, Ryan has AIDS.”
I told Andrea, I said “Andrea, if Ryan really does have AIDS,” I said, “we’re gonna get in the car, and we’re gonna turn the car off and we’re gonna all go together.”
Worse thing a mother could ever say. Because I said it off the top of my [head]. I was just so—I had nobody, you know. You have nobody to talk to.
I asked Dr. Kleiman, I said, “Dr. Kleiman, I want to know all there is to know about this disease.”
He said, “There’s not a lot of information out there.”
He goes, “I’m going to give you the number of the American Foundation for AIDS Research [amfAR].”
So I called amfAR, and on the other end of the line was a gentleman by the name of Terry Burn. I always feel like there’s all these people that’s been sent to help me. He said, “Jeanne, we’re finding out here in New York, far sooner than anywhere else, what works and what doesn’t work.”
He said, “Anytime you have a question, anytime you have a concern, you call me.”
Well I had nobody, so I called Terry all the time. And we got to be very good friends, I mean you know, he knew what I was going through. I mean, I didn’t know really that he had AIDS. I thought he might have, but, you know because he was working at amfAR. But, I don’t know, I just—because we [families and people living with HIV/AIDS] were in this all together. I started meeting their [people living with HIV/AIDS] moms and their dads, and their families. And I realized, hey everybody’s just like me. You know, Ryan is just like them. We’re all fighting to stay alive, for our kids to stay alive.
Matt Frewer, who is—I don’t know whether you know who Matt Frewer is—Max Headroom. Ryan had a poster. [Matt Frewer] saw Ryan in People Magazine, [and that he] had a poster of Matt Frewer [as Max Headroom] on the wall. And Matt called me, he asked me if I was working. I said, “Yeah.”
You know he goes, “How much would it take for you to take off work for three months?”
I said, “Oh I can’t do that.”
He goes, “No, how much?”
And, I don’t know, I figured it up, and I said, “Like ten thousand dollars or something like that.”
He goes, “Can you get a leave?” He said, “I want to send you a check.”
He goes, “I just want you to be home with your son for three months.”
You know, Ryan’s doing great, I mean it’s like he’s the healthiest he’s been in, in years.