Growing Up With HIV, Part 1: A Journey to Advocacy

Ashley Rose Murphy with her mother, Kari Murphy.

Sandy Nichols

Ashley Rose Murphy is 17 years old and has been living with HIV since birth. She uses her voice to educate people about HIV/AIDS and help combat fear and stigma many people living with HIV must face every day. She is sharing her story and her journey to becoming an advocate with EGPAF. Read her first installment below.

For people around the world ‘Mother’ has many meanings. For children around the world who are orphaned, mother could be a relative, grandmother, a neighbor who has taken you in. It could be an adoptive or foster mother, stepmother or two mothers.

For me, the definition is complex. There is the woman who gave birth to me – who gave me life. I have her eyes. Her smile. Her temper and her laugh. I also have her virus - HIV. Mother is also the woman who has raised me since I was six months old. Who took me in when no one else would. The woman who saved my life.

My birth mother was saddled with a lot of turmoil in her youth. I was the fourth baby she gave birth to – each of children, including me, was removed from her care. By the time she had me, the risky life on the streets had worn her down and she had contracted HIV and later transmitted it to me. By six weeks of age, I was in respiratory distress and the HIV had already progressed to AIDS. I was put into a medically induced coma for more than three months in order for my body to rest and heal. When I was taken off life support, Child Protective Services (called Children’s Aid Society (CAS) here in Canada) started looking for a foster home to take me for palliative care. There was a viral outbreak in the Pediatric Intensive Care Unit and they knew they had to get me out of there or the virus could kill me. I was very weak. I was six months old and only weighed 8 pounds three ounces. Doctors estimated I had 4 to 6 weeks to live. This was in 1998, when many people knew very little about HIV and were still very afraid of the virus. After more than 200 phone calls and rejections, CAS finally found a couple that would take me: Don and Kari Murphy.

The Murphys already had her hands full. They were raising five children at the time, all with special needs. Three had cerebral palsy and two had serious medical conditions but they still felt that they could offer me love. They were afraid that I would die alone in a cradle so they never put me down. I was in a sling or in their arms or laying in between them in their bed for almost a year. I was not just loved, I was beloved and I knew it. I kept getting stronger and growing. Doctors diagnosed me with mild cerebral palsy, Fetal Alcohol Syndrome and a Developmental Delay but I persevered. I worked hard to overcome my physical and learning disabilities. I gained weight, and learned how to walk and talk. I still can’t ride a bike or skate, but I did learn how to use my voice. My first word was ‘cookie’ and from that moment on you could hardly get a word in edgewise. And today, I am proud to use that voice to help teach others about HIV/AIDS and make sure that other people who are living with HIV know that they can lead healthy and full lives.

On Christmas morning 2012, my mom and dad sat me down again with serious looks on their faces. I knew it was going to be bad news. My birth mom, Debbie, had died during the night in a house fire. I was devastated. I had kept it contact with her and with my whole birth family and was scheduled to have my Christmas visit with her in two days. I gathered the strength – again with support from my mom and the tenacity I got from my birth mom – to deliver her eulogy. This speech was the hardest speech I have ever had to give.

Debbie lived a tough, short life.  I hope that I have honored her memory by speaking out about HIV and trying to educate others. I remember her being so afraid of people finding out. She never hid her addictions, she was open about her struggles and was often mad at herself when she would falter but the HIV was something she never told others about. I went through a period where I was upset that Debbie had “done this to me” but my mom, Kari, explained to me that told me sometimes people end up in a spot they never thought they would be in and they don’t know how to get out of it. The hole just gets deeper and deeper if you don’t have to tools and support to get your life back on track. That changed my perspective a lot. I realized that there was nothing I could do about my HIV status, but I had the power to help others instead of letting it get me down.  I really hope that my birth mom is proud of me and that I have turned a negative part of her life into a force for good.

I am eternally grateful for both of my mothers – Debbie and Kari. Who have each had a tremendous impact on my life. One gave me life and the second saved it.

And thanks to both of them, today I am proud to work with organizations like the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) to share my story and hopefully inspire others to speak out.
Together, I know we can achieve a world where no child has AIDS.