Living Strong

If there is ever a story that I feel is personally rewarding to cover based purely on the joy and love I am left feeling after doing a interview, it's this one. I was connected to this wonderful family by Ken Henderson, the Executive Director of REAF (The Richmond/Ermet AIDS Foundation), which has personally touched their organization greatly. It's impossible not to love Dillon after hearing about his story, and it's impossible not to feel love for his mother, Deb, who was such a pleasure to talk to as she tells Dillon's story to us. If there is hope and strength that we should never give up, it's reflected in Dillon's story.

Bambi Weavil: Please tell us about your beautiful son, Dillon. How did Dillon contract AIDS?

Deb (Dillon's mother): Dillon acquired HIV from his birth mother through Vertical Transmission which is when an HIV+ mother passes the Virus on to her baby before or during birth.

BW: How old was he when he found out?

Deb: Dillon was four or five years old when I told him he had HIV. Up until then, I talked freely about HIV on the phone and with friends and family, making HIV part of our lives—normalizing it as best I could. Since Dillon was Developmentally Delayed, I wanted him to be a little older before I told him so he could have a better understanding of HIV.

After I told him, he wanted to know just one thing, and that was if he was going to die (he had already lost a handful of friends from Children’s Hospital from HIV). I told him that he was really healthy right now, and that’s what counts; and though everyone dies at some point, right now he was very much alive and doing very well, so he didn’t need to worry about that right then because he was doing such a good job of taking his pills and getting his I.V. meds. He accepted that full-heartedly, and scooted off to play with his colorful matchbox cars.

He is a pretty healthy 17-year-old now, and we still revisit what HIV is and what it does to the body when he has questions. Although he gets very sad at times when he thinks about all the people he has lost to HIV and that he has it and what that might mean to him, most of the time Dillon is engaged in living life to the fullest and looking forward to the future. (He wants to marry and have two daughters.)

BW: How old was he when you found out?

Deb: When Dillon’s mother came into the hospital in labor two months prematurely, she admitted to being high on drugs and begged the doctors to save her baby. Because she had confessed to using needles, they did complete blood work-ups to see what she and her unborn baby had been exposed to. Both their HIV tests came back positive for Mom’s HIV antibodies.

When I picked him up from the hospital, I took him to Oakland, California to Children’s Hospital’s Pediatric HIV Clinic to have a more definitive test done. That test actually looked for the virus, and not just his mother’s antibodies. Two weeks later the test came back positive for the virus. He was a tiny three and a half month old, and we were all devastated! He began liquid AZT that very day.

BW: What is a common misconception do you feel with how people view people living with AIDS?

Deb: Most people know how HIV is contracted (having sex [anal, vaginal, or oral] with someone infected with HIV, sharing needles and syringes with someone infected with HIV, receiving a blood transfusion with tainted blood, Vertical Transmission which is from an HIV+ mother to baby before or during birth, or through breast milk).

However, (and this is so grievous!) with child-to-child contact, parents soon forget that their child cannot contract HIV from an infected child when there is no presence of blood. Saliva is not one of those transmission routes, but anxiety can make it seem a viable route in fearful parents. And for this reason, children with HIV are oftentimes excluded from normal childhood experiences when parents of HIV negative children know that they are infected.

BW: Please tell us one of your favorite stories about Dillon.

Deb: One of my most favorite stories about Dillon speaks to his courage and fortitude.

The first time we went to Camp Sunburst (a camp for HIV infected and affected children and their families), Dillon was only five and a half. He got very attached to the founder’s daughter and her boyfriend, hanging with them every chance he could. On the day of a skit, her boyfriend played “The Wind” (a very threatening character), and she was a young woman who was vulnerable to his “attacks.” Dillon was sitting in my lap and recognized that the founder’s daughter was being threatened. His little body got very tense, and with each breath he got more and more terrified for his new friend. “The Wind,” whom he did not recognize as his friend because of his costume, scared him so much that he was paralyzed with panic. Then it got to the point that he couldn’t take any more “assaults” on her. He jumped up out of my lap and attacked “The Wind” in his five and a half year old way. Although he was sick with fear, brave young Dillon put his friend before his fear and did what he felt he needed to do to save his friend.

Needless to say, he stopped the show! “The Wind” took off his costume, and they took him backstage to help him understand that he was just playing a part. For the final act, they incorporated Dillon into the skit, and he was able to use his newfound sense of storytelling and his righteous emotions to entertain others. Dillon and his two new friends illustrated what Camp Sunburst has become to mean: How one can courageously face and overcome even the scariest of things with support from the community.

BW: Did Dillon feel supported by the community?

Deb: When Dillon was five, we moved back up to the Russian River (a gay Mecca). Here we found many HIV infected gay men and negative gay men and lesbians who were acting as their support system. After people got to know Dillon, he became their hero! We were instantaneously surrounded and loved by this community. I was so proud to be a lesbian in a community that was so forthcoming with love and support.

Our first summer here found Dillon splashing in the river or covering himself with the warm sand to take off the chill of the river and me sitting on the beach talking meds and new therapies with my friends who were Positive. Protease inhibitors (P.I.s) were new, and everyone seemed to be doing better on them. The mood was so much lighter than it had been before the P.I.s, because everyone there had basically come up to the River to die.

It was at the end of this summer that I learned that three of Dillon’s friends were not doing well and going downhill quickly. After asking each of their mothers if they were on protease inhibitors and given negative answers, I approached our children’s doctor. She said she was afraid to give them the new meds, because she didn’t know how they work on children; there had been no studies on the meds that involved children. She didn’t know how the meds would affect them, on their efficacy, on their side effects, their impact on growing bodies, etc.; and she didn’t want to do them any harm.

Because of the support of our community, I was able to call together a group of moms to talk about what we could do to get these life-saving drugs for our kids. Dr. Amman and Act Up Golden Gate came to that meeting and encouraged us to go back and speak to an FDA Drug Approval Hearing about our children’s stories.
Act Up Golden Gate paid for Dillon and me to go back to Gaithersburg, MD. While I was reading Dillon’s story to the panel of doctors, six-year-old Dillon was blowing bubbles and dancing in front of that panel. All eyes were on Dillon and me; we were heard. During that meeting, the panel gave a “stern warning” to drug companies saying that before they come in front of another FDA Hearing with a new drug, they should have done at least one study on children.

From the publicity of that Hearing, we came home to our doctor going ahead and giving the three boys one of the protease inhibitors. These kids are now teenagers and doing very well—thanks to the P.I.s!!! If it hadn’t been for our wonderful community, none of this would have happened as early as it did.

BW: How did Dillon stay active and not defeated?

Deb: The docs didn’t think Dillon would make it to his first birthday, because he looked so sickly and was failing to thrive. Yet, I could always see in his beautiful brown eyes a strong and exuberant soul who was going to be O.K. So that whole first year I fought with the docs’ fears when they cared for him; I pleaded with them to not look at him with such sad eyes. I asked them to trust me and know that he was a valiant fighter and really had a chance to fight this awful virus. Since then, this Mama Bear has protected him from those who would think he was doomed.
I believe Dillon never felt defeated, because he always had people around him who loved and supported him and focused on his strengths—not his vulnerabilities.
One of his main strengths is how active he is. He has learned to put that to work by being very active in sports; he is one very fine Special Olympic Athlete! He plays basketball, tennis, bocce ball, softball, and soccer. He swims, ice skates, and is a fast short-distance runner.

The Special Olympic motto is: “Let me win, but if I do not win, let me be brave in the attempt.” That is what we always try to remember--no matter what!

BW: How would Dillon like to be remembered?

Dillion: "I want to be remembered as a Special Olympic Athlete who does a lot of sports and who has HIV but is living strong, because I take my meds."

BW: What should family members do to help support their relatives battling AIDS?

Deb: Family members can support their relatives with HIV/AIDS by listening to and loving their relatives who are Positive. There are many nasty side effects of the anti-retroviral drugs; so while people are living longer, it’s still very tough to have HIV/AIDS. And if their relative is a child or baby, do not write them off! All we have is today to love each other; we need to show that love each and every day! Dillon and I know in our hearts that it is the journey, not the outcome, that is important.

BW: What would you ask the GLBT community to do to support people with AIDS?

Deb: Please do not forget that people living with HIV/AIDS still have very intense needs. We as a community cannot walk away saying or thinking that the epidemic is over. We still need a lot of support!




	Living Strong If there is ever a story that I feel is personally rewarding to cover based purely on the joy and love I am left feeling after doing a interview, it's this one. I was connected to this wonderful family by Ken Henderson, the Executive Director of REAF (The Richmond/Ermet AIDS Foundation), which has personally touched their organization greatly. It's impossible not to love Dillon after hearing about his story, and it's impossible not to feel love for his mother, Deb, who was such a pleasure to talk to as she tells Dillon's story to us. If there is hope and strength that we should never give up, it's reflected in Dillon's story. Bambi Weavil: Please tell us about your beautiful son, Dillon. How did Dillon contract AIDS? Deb (Dillon's mother): Dillon acquired HIV from his birth mother through Vertical Transmission which is when an HIV+ mother passes the Virus on to her baby before or during birth. BW: How old was he when he found out? Deb: Dillon was four or five years old when I told him he had HIV. Up until then, I talked freely about HIV on the phone and with friends and family, making HIV part of our lives—normalizing it as best I could. Since Dillon was Developmentally Delayed, I wanted him to be a little older before I told him so he could have a better understanding of HIV. After I told him, he wanted to know just one thing, and that was if he was going to die (he had already lost a handful of friends from Children’s Hospital from HIV). I told him that he was really healthy right now, and that’s what counts; and though everyone dies at some point, right now he was very much alive and doing very well, so he didn’t need to worry about that right then because he was doing such a good job of taking his pills and getting his I.V. meds. He accepted that full-heartedly, and scooted off to play with his colorful matchbox cars. He is a pretty healthy 17-year-old now, and we still revisit what HIV is and what it does to the body when he has questions. Although he gets very sad at times when he thinks about all the people he has lost to HIV and that he has it and what that might mean to him, most of the time Dillon is engaged in living life to the fullest and looking forward to the future. (He wants to marry and have two daughters.) BW: How old was he when you found out? Deb: When Dillon’s mother came into the hospital in labor two months prematurely, she admitted to being high on drugs and begged the doctors to save her baby. Because she had confessed to using needles, they did complete blood work-ups to see what she and her unborn baby had been exposed to. Both their HIV tests came back positive for Mom’s HIV antibodies. When I picked him up from the hospital, I took him to Oakland, California to Children’s Hospital’s Pediatric HIV Clinic to have a more definitive test done. That test actually looked for the virus, and not just his mother’s antibodies. Two weeks later the test came back positive for the virus. He was a tiny three and a half month old, and we were all devastated! He began liquid AZT that very day. BW: What is a common misconception do you feel with how people view people living with AIDS? Deb: Most people know how HIV is contracted (having sex [anal, vaginal, or oral] with someone infected with HIV, sharing needles and syringes with someone infected with HIV, receiving a blood transfusion with tainted blood, Vertical Transmission which is from an HIV+ mother to baby before or during birth, or through breast milk). However, (and this is so grievous!) with child-to-child contact, parents soon forget that their child cannot contract HIV from an infected child when there is no presence of blood. Saliva is not one of those transmission routes, but anxiety can make it seem a viable route in fearful parents. And for this reason, children with HIV are oftentimes excluded from normal childhood experiences when parents of HIV negative children know that they are infected. BW: Please tell us one of your favorite stories about Dillon. Deb: One of my most favorite stories about Dillon speaks to his courage and fortitude. The first time we went to Camp Sunburst (a camp for HIV infected and affected children and their families), Dillon was only five and a half. He got very attached to the founder’s daughter and her boyfriend, hanging with them every chance he could. On the day of a skit, her boyfriend played “The Wind” (a very threatening character), and she was a young woman who was vulnerable to his “attacks.” Dillon was sitting in my lap and recognized that the founder’s daughter was being threatened. His little body got very tense, and with each breath he got more and more terrified for his new friend. “The Wind,” whom he did not recognize as his friend because of his costume, scared him so much that he was paralyzed with panic. Then it got to the point that he couldn’t take any more “assaults” on her. He jumped up out of my lap and attacked “The Wind” in his five and a half year old way. Although he was sick with fear, brave young Dillon put his friend before his fear and did what he felt he needed to do to save his friend. Needless to say, he stopped the show! “The Wind” took off his costume, and they took him backstage to help him understand that he was just playing a part. For the final act, they incorporated Dillon into the skit, and he was able to use his newfound sense of storytelling and his righteous emotions to entertain others. Dillon and his two new friends illustrated what Camp Sunburst has become to mean: How one can courageously face and overcome even the scariest of things with support from the community. BW: Did Dillon feel supported by the community? Deb: When Dillon was five, we moved back up to the Russian River (a gay Mecca). Here we found many HIV infected gay men and negative gay men and lesbians who were acting as their support system. After people got to know Dillon, he became their hero! We were instantaneously surrounded and loved by this community. I was so proud to be a lesbian in a community that was so forthcoming with love and support. Our first summer here found Dillon splashing in the river or covering himself with the warm sand to take off the chill of the river and me sitting on the beach talking meds and new therapies with my friends who were Positive. Protease inhibitors (P.I.s) were new, and everyone seemed to be doing better on them. The mood was so much lighter than it had been before the P.I.s, because everyone there had basically come up to the River to die. It was at the end of this summer that I learned that three of Dillon’s friends were not doing well and going downhill quickly. After asking each of their mothers if they were on protease inhibitors and given negative answers, I approached our children’s doctor. She said she was afraid to give them the new meds, because she didn’t know how they work on children; there had been no studies on the meds that involved children. She didn’t know how the meds would affect them, on their efficacy, on their side effects, their impact on growing bodies, etc.; and she didn’t want to do them any harm. Because of the support of our community, I was able to call together a group of moms to talk about what we could do to get these life-saving drugs for our kids. Dr. Amman and Act Up Golden Gate came to that meeting and encouraged us to go back and speak to an FDA Drug Approval Hearing about our children’s stories. Act Up Golden Gate paid for Dillon and me to go back to Gaithersburg, MD. While I was reading Dillon’s story to the panel of doctors, six-year-old Dillon was blowing bubbles and dancing in front of that panel. All eyes were on Dillon and me; we were heard. During that meeting, the panel gave a “stern warning” to drug companies saying that before they come in front of another FDA Hearing with a new drug, they should have done at least one study on children. From the publicity of that Hearing, we came home to our doctor going ahead and giving the three boys one of the protease inhibitors. These kids are now teenagers and doing very well—thanks to the P.I.s!!! If it hadn’t been for our wonderful community, none of this would have happened as early as it did. BW: How did Dillon stay active and not defeated? Deb: The docs didn’t think Dillon would make it to his first birthday, because he looked so sickly and was failing to thrive. Yet, I could always see in his beautiful brown eyes a strong and exuberant soul who was going to be O.K. So that whole first year I fought with the docs’ fears when they cared for him; I pleaded with them to not look at him with such sad eyes. I asked them to trust me and know that he was a valiant fighter and really had a chance to fight this awful virus. Since then, this Mama Bear has protected him from those who would think he was doomed. I believe Dillon never felt defeated, because he always had people around him who loved and supported him and focused on his strengths—not his vulnerabilities. One of his main strengths is how active he is. He has learned to put that to work by being very active in sports; he is one very fine Special Olympic Athlete! He plays basketball, tennis, bocce ball, softball, and soccer. He swims, ice skates, and is a fast short-distance runner. The Special Olympic motto is: “Let me win, but if I do not win, let me be brave in the attempt.” That is what we always try to remember--no matter what! BW: How would Dillon like to be remembered? Dillion: "I want to be remembered as a Special Olympic Athlete who does a lot of sports and who has HIV but is living strong, because I take my meds." BW: What should family members do to help support their relatives battling AIDS? Deb: Family members can support their relatives with HIV/AIDS by listening to and loving their relatives who are Positive. There are many nasty side effects of the anti-retroviral drugs; so while people are living longer, it’s still very tough to have HIV/AIDS. And if their relative is a child or baby, do not write them off! All we have is today to love each other; we need to show that love each and every day! Dillon and I know in our hearts that it is the journey, not the outcome, that is important. BW: What would you ask the GLBT community to do to support people with AIDS? Deb: Please do not forget that people living with HIV/AIDS still have very intense needs. We as a community cannot walk away saying or thinking that the epidemic is over. We still need a lot of support!			Meet Dillon, our special friend affected by HIV Ashley Judd, Global Ambassador for YouthAIDS YouthAIDS Global Ambassador, Ashley Judd's Asia Diary * Every day, 14,000 people contract HIV * 40.3 million people now live with HIV * AIDS kills one child every minute Featured Performer Raising Awareness for AIDS: Annie Lennox The Concept Behind "Sing": More Videos Please purchase "Sing" by clicking here Annie's Call to Action: More Videos Please purchase "Sing" by clicking here

	In Loving Memory - Some of Those We Lost to AIDS: Steven Bates, Bob Bendorff, Doug Boar, Joey Brunneti, Jay Burwick, Ray Coe, Keith Dodge, Doug Ermet, Gary Falardeau, Mark Fotopoulos, Jim Franks, Bill Graham, Jeffrey Grover, Jim Hankins, Frank Harper, Mike Hendricks, Frank Jackson, Jay Jackson, Pat London, Terence Maguire, John McLeod, Terry Peterson, Ron Pierson, Mark Pritchett, Steve Prokasky, John Richmond, Bill Robles, Steve Roher, Kenny Sasha, Jack Simmons, Randy Smith, Ted Smith, Jeffery Vogt...