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  WINDY CITY TIMES

AIDS: Jeanne White-Ginder speaks about her son, Ryan
by Sarah Toce
2011-07-13

This article shared 16459 times since Wed Jul 13, 2011
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During a partial-lung removal procedure for pneumonia in December 1984, hemophiliac Ryan White was diagnosed with AIDS. The disease was associated mostly with the gay community at the time, but there was one problem. Ryan was not gay. He had unknowingly contracted the HIV virus while receiving a contaminated treatment of Factor VIII.

More than anything, Ryan wanted to be a normal teenager in Kokomo, Ind. He longed for the days when his sister would come home from school, a place he had been banned from because of his illness, so that he could feel what it must have been like outside of his home. His public court battles with the medical system, school system, and nearby communities did not define him but, rather, gave him a cause for which to fight. A persistent warrior, Ryan never complained about the disease overtaking his body. He longed to change the world.

At the start of his short battle with AIDS, Ryan was a 13-year-old student with the whole world in front of him and a diagnosed six months to live. Beside him were his mother, Jeanne, and sister, Andrea.

In a recent interview, Jeanne White, now Jeanne White-Ginder, told her story to Windy City Times.

Windy City Times: After Ryan was diagnosed with HIV following a blood treatment for hemophilia in 1984, your family was treated so poorly in your hometown of Kokomo, Ind., that you had to leave and move elsewhere to start anew. What must that have felt like?

Jeanne White-Ginder:I think maybe priorities helped make the decision to move and wanting Ryan to live. Making his life the best that I could make it … you tolerate a lot of things. You try to be understanding because you realize that people act a certain way because they are uneducated. You have to set priorities. It was hard on my daughter and it was hard when I went to work. I had to really ask myself at times, "What is really important here?" It was easy to get caught up in the negativity and want to release back, but I had to pray a lot about it and ask the Lord to help me not saying anything back to people that I would feel sorry for later. My daughter, Andrea, and I talk a lot about how we made it through it all and we're not really sure. You do what you have to do.

One of the things I used to tell Ryan was that as long as you know in your heart that what you're doing is right—it can't be wrong. I think that goes for so many things in life, you know? I just do. Everybody thinks that life is a set plan, but it's not.

Ryan was only supposed to live three-six months. At that time, that was all people were living. He had a T-cell count of 25 and it never went any higher the whole time and, it was more or less, that was the way it was going to be. I wanted to give him more time and anything I could possibly do. If it was up to me, I wanted him to live and I wanted to be there for him.

Windy City Times: Little was known at that time about AIDS, correct?

Jeanne White-Ginder:There was so little known at that time. I remember at our first court hearing thinking we had all of these famous infectious disease doctors on our side. We had the Centers for Disease Control ( CDC ) on our side even. The other side of the argument had local doctors saying that if their kids were going to school with Ryan, they wouldn't allow it and that if he were a patient of theirs, they wouldn't treat him. And I thought, "Wait a minute!" When you have doctors against doctors, then it's the qualifications of those doctors that you start comparing. I was surprised at the little education the doctors had about AIDS at that time unless they were infectious disease doctors. It was hard to be understanding. We had to draw strength in that somehow and some way we were going to get through it.

Windy City Times: Can you recall a specific circumstance where you felt like "this is it, we have to leave" or was it a combination of unfavorable events?

Jeanne White-Ginder:One of the deciding factors for me to fight for him to go to school was that every day when I came home from work, he couldn't wait to see me. I mean, you love that as a mom! And every day when his sister would get off the bus from school, he was so excited. It was almost like he was waiting to die and like we were waiting for him to die. He asked me if I could see if he could go back to school. I didn't think about the ramifications of what might happen—I just wanted to see the smile on his face and for him to have hope again. It was so sad when it was the highlight of his day to have me come home. The attorney told Ryan that it might get really tough in court and Ryan just said, "I can take it." I was right there with him in that. I don't know how we did it, but somehow we did.

Windy City Times: Before Ryan, AIDS was a disease widely associated with the gay male community. Ryan's diagnosis completely changed the focus and hatred of the gay population.

Jeanne White-Ginder:Let me tell you how this all kind of came about. We had no information about AIDS and Ryan was only given three-to-six months to live. I told the doctor, "I want to know everything there is to know about this disease so that I can help Ryan." He said, "Mrs. White, there's not a lot of information out there. I know you're a strong Christian lady, but you have to remember that the people who are fighting this disease and trying to do something about it are mostly the gay community." He gave me the information for The American Foundation for AIDS Research ( amfAR ) and didn't know if I would actually call, but I did call. I mean, if there was someone else out there that knew more about the disease than I did, I was going to do everything I could to help my son.

I didn't know what to expect. I didn't know any gay people ( that I knew of anyway ) . At the time, there were no social workers or therapy for me or for Ryan. amfAR was operating out of New York and they knew more about what was going on with the disease because of the numbers, you know. They told me that any time I had any questions I could call them and I remember thinking that I would need to call all of the time because any time Ryan had a cough or a fever, I would wonder if it would be the last one. I would be wondering if I was doing enough. The pressure of trying to learn about the disease when it was so new like that! Because of amfAR, I started meeting more people with AIDS. I started meeting the patient's moms and dads and I started understanding more about what was going on. Nobody else had anything to do with us at that time but we had each other.

At one point, there was a new drug introduced called PHA23 and I was told that there was going to be some testing done with that drug at Roosevelt Memorial Hospital in New York. There were new drugs introduced every day and it seemed like none of them ever worked. We were asked if we wanted to go to New York to try the new drug there and we said yes. We would've done anything that might help Ryan at that time. We met a lot of new people there who were also infected and going through a lot of what we were going through. Ryan was famous by that time because of all the court battles and everything.

One day a gentleman came up to Ryan and introduced himself to him. Ryan never knew how people knew him. He was reading a comic book at the time and the gentleman didn't understand why he was doing that. He told Ryan, "Our whole community is running so scared and here you are reading a comic book." Ryan just said, "Yeah." The guy went on and said, "You know they found 12 tumors in me. I haven't been diagnosed with AIDS yet, but they are pretty sure that's what I have. I just want to thank you for all you've done for us people with AIDS." He walked away and Ryan turned to me and said, "Mom, I'm the only one that really knows what he is going through. We're both fighting the same disease."

So, that was one of the reasons we took up the cause of supporting everybody. Once we met people [ regardless of sexual orientation ] we liked them. They were all just like us. I met their family members, their friends, their partners … we were all the same.

Windy City Times: A lot of people assumed that Ryan must have been gay because of his contraction of the disease.

Jeanne White-Ginder:Everybody was saying at the time that Ryan had to be gay or that he did something wrong or bad to contract the disease. I kept trying to explain to them that he got it from his Factor VIII used to treat his hemophilia. They would say, "Well, why don't we hear this from others then?" Well, you didn't then because in 1985 was when they started realizing that 85% of hemophiliacs were HIV-infected. The only known case was Ryan because he was one of the first hemophiliacs they found the virus in. He was one of the first groups of hemophiliacs tested at that time. People would just assume that he had done something bad to have gotten the disease and it was not true.

I didn't know how the gay community was being treated until we were involved with AIDS, too. He was being called "homo" and "fag" and everything. I mean, we heard it all. I knew that amfAR was doing everything they could do for the gay community and for everyone infected with AIDS.

Windy City Times: Ryan passed away from complications with AIDS in 1990 at age 18. How has the face of AIDS in the world changed since then? Do you feel like there has been progress in combating and halting the spread of the HIV virus?

Jeanne White-Ginder:I would never have dreamt, Sarah, that after 30 years, Ryan would still be remembered and doing such great things by his name. I mean, every time we went anywhere, we never knew who would still be alive and who wouldn't be. People were dying so fast. Every other year we have these Ryan White meetings in Washington, D.C. and it's so neat to me because, most likely, I'll get to see some of the same people again. They are living longer now. I remember some of them from the beginning.

My biggest fear is that, especially in the gay community, the generation of young men out there now won't remember the devastation that we all had to go through. I just hope that the numbers don't start increasing now because we have meds to help treat AIDS where we didn't before and that people aren't going to be lax about prevention because of it. There is a rise now in young gay men. Back when Ryan got it, you didn't want it! You fight so hard for the meds and then you see people taking the situation with less seriousness. We want to convince and educate people not to get it! Because of religious and moral issues that have always surrounded this disease, it's always been "easier" to blame someone else. Ryan used to say, "Let's make this a disease where you can talk about it and not a dirty word." Even in the press, an AIDS story comes on and people just sort of tune it out … unless you're affected or infected.

Windy City Times: The Ryan White Comprehensive AIDS Resources Emergency ( CARE ) Act passed through U.S. Congress on Aug. 18, 1990 in honor of Ryan. The Act was reauthorized in 2006 and 2009 ( Ryan White HIV/AIDS Treatment Extension Act ) . How do you feel now about the CARE Act?

Jeanne White-Ginder:The only thing that saddens me is that, yes, Ryan's name is on the Ryan CARE Act and he is remembered, but you never hear about everyone else involved that did all of the hard work. You will never hear their names. I always try to make sure to remember them in interviews and when I talk because they really helped me learn to like a person for who they are. They helped me to become very open-minded. I saw how Christians acted and behaved regarding this disease and it really saddened me. It still does.

I had a foundation for education and resources, but people were getting confused with our foundation and the Ryan White CARE Act. The Ryan White CARE Act is federally funded and it made more sense to us to let them be the place for resources. Many people were getting the foundation and the CARE Act confused.

Windy City Times: In the early years of AIDS, it was very uncommon to find solace in the general public, but there were very public figures surrounding your family. Can you tell us a little bit about Michael Jackson's and Elton John's involvement in your life back when Ryan was battling AIDS?

Jeanne White-Ginder:Elton John was the first celebrity to come forward and support us. We were doing an event with amfAR and they asked if Ryan would come out and co-host it with Elizabeth Taylor. Of course we said yes. Ryan was looking forward to meeting Elton and was so excited. We knew of him but had never met him at that time. He was 14-years-old and didn't know who Elizabeth Taylor was … I hate to even say this! He said, "Who is Elizabeth Taylor?" He knew who Alyssa Milano was, though! Elton had jetlag and couldn't attend that night, though.

Ryan was like a little trooper meeting all of these people. I was just beaming when he met [ New York ] Mayor Edward Koch. They did a press conference together and were so funny making jokes! I mean, I always knew he was funny, but I didn't know how funny I guess.

The next morning, we were in the limo getting ready to go back home ( Good Morning America had furnished our trip ) when the phone rang. Ryan, Andrea and I were like, "Who knows we're in this car? We're no one special!" It was Elton. He had called Good Morning America and had tracked us down because they told him we were in the car on our way back to the airport. He said he wanted to meet us and he planned three trips for us to meet him. He flew us to Los Angeles and we were only going to spend five days there with him, but we had so much fun that we decided to stay five more days. He really became part of the family.

At first, I think they felt sorry and wanted to do something [ the celebrities ] . Ryan never talked about his illness. That was one thing Michael Jackson always said about Ryan. Ryan used to say, "If people would stop reminding me that I have AIDS I'd forget I have it." We were just such a typical family and we never asked for things. The friendships were genuine. Michael and Elton knew that they could always trust us.

Windy City Times: What was it that brought Michael and Ryan so close?

Jeanne White-Ginder:After Ryan died, I'll kind of tell you this. … The last week-and-a-half of Ryan's life, Elton was at the hospital taking care of everything. Michael called the hospital and asked to speak to me. He wanted to talk to Ryan, but I had to tell him that Ryan couldn't hear him because he was in a coma. Michael said to me, "No, I know he will be able to hear me. Can you just get a telephone line ran to his room?" I knew that if anyone could do that it would be Elton. He was getting everything done at the hospital!

So, Michael called and we had a telephone line ran to Ryan's room. Elton put the phone up to Ryan's ear and Michael was talking to Ryan. I looked over at Elton and he had these tears just streaming down his face. I put my arm around him and asked him what was wrong and he said, "With all the money in this room, we cannot bring this boy back to life." It was such a sincere moment.

Ryan passed away and Elton entered rehab. Elton says now that he considers Ryan responsible for helping to save his life.

Three days after Ryan's funeral Michael called me and asked how I was doing. I asked him what made him and Ryan so close and he said, "Most people can't get over who I am so they never act normal around me." He said, "Jeanne, I can't trust anyone. Everyone wants something from me."

He then told me that he had promised Ryan that he could be in his next video, but now he couldn't honor that promise because Ryan was gone. So, he asked me if he could do the video for Ryan so that he could keep his promise. I said, "Michael that would really be cool." Michael did the video. He was a man of his word. The video was called, "Gone Too Soon." He spent a million dollars getting the rights for all of the media because of a promise that Michael made. Michael told me later, "Ryan never once talked to me about his illness. He never wanted me to feel sorry for him." He told me that the last time he saw Ryan was in January and he knew then that it might be the last time he'd get to see him. Ryan was out there for three days. He said Ryan never complained. Michael said, "The only thing he did was complain about being cold and I went out and got him a bomber jacket."


This article shared 16459 times since Wed Jul 13, 2011
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