Heartfelt Stories

We asked you to tell us your stories. With unflinching honestly and candor, you shared your joys and sorrows, your triumphs and losses, and, most importantly, your indomitable spirits. It is our privilege to share excerpts from some of your writings.

An adoptive mother of a 14 year old HIV positive boy gives an inspiring witness to the power of love expressed in medical advocacy. She writes:
“When I first met him, he lived at a nursery for babies and children affected by HIV. I would watch as he spit out more than half of his medicine… When he came to live with me at two years of age, he was taking medicine 13 times a day, and I was told that I couldn’t be even five minutes late. I lived with alarm clocks to remind me so I would never miss a dose. This was not beneficial to our family life so I took matters into my own hands and researched what he was taking. I was able to see that there were several meds he no longer needed, and the ones he did need could be given at much better times. I got it down to six times a day, then four, and now two. Another struggle came from a very burned out doctor who had seen too many children die and had given up. I asked for resistance testing as my son’s viral load was in the 300,000s. He said it was a waste of time and money and refused. I found a doctor who was not only willing but would not make med decisions without it. We are still in her care, and his viral load has been undetectable since. It was recommended by the new doctor that a g-tube be put in to make med compliance easier. After much thought, we agreed. During his hospital stay for that procedure, the original doctor came to visit and said, ‘I guess some people have to try everything before they give up and realize it is hopeless.’ I believe my son would not have lived if we stayed in his care. Our lives are happy, fairly normal, and HIV is but a small part of our existence. I look forward to watching my son grow into adulthood. I worry that there is not the same fervor to develop new medications and, with the problem of resistance many people have, just a few med regimens left. Thank you for all you do to raise money and awareness to our plight.”

A 38-year old gay man considers himself “one of the lucky ones”. He tested positive for HIV 16 years ago and has enjoyed steadfast support from his family. He says:
“My mom has been there for everything, as have the rest of my family. They don’t treat me any different than they used to. As a matter of fact, I would say that it has brought us closer as a family. I wish that more families would understand that we are human… We need the support of our families. Without them I would have been dead a long time ago, not physically, but mentally and emotionally. I have been blessed, and I hope that more people can hear my story and see that a family’s love is one of the most important things in helping a person who has been affected by HIV/AIDS deal with what they are going through.”

A young woman shares childhood memories of donating food, time, and gifts to the Milwaukee AIDS Project in honor of family friends who were afflicted with the disease. As she came to maturity, her parents told her that her uncle had died of AIDS years before. AIDS wasn’t just a family charity; it was personal. She writes:
“My fight against HIV/AIDS has been small but steady. Giving donations in the name of friends and family members instead of a gift cards on birthdays, utilizing products from organizations like UTAC for gifts, knowing that it’s all for a greater good. I have traveled to Africa and witnessed the hardships and triumphs of both the disease and those who are rising to help fight it. My passion to serve those with it runs deep, just like my love for those who have already lost their battle to it.”

A loving sister remembers her gifted and vivacious brother who died far too young in 1994.
“I miss his impish smile, his love of cooking, the way he clapped his hands and jumped when he was excited. He would throw wildflower seeds around as he was walking to work ‘so there would be surprises in the Spring,’ he said… We created a memorial garden for [him] and for others who have died of AIDS. [He] is buried there, along with others. The garden is full of wildflowers… Every Spring there are surprises.”

A striking Cuban-American with dreams of a career in broadcasting got an unpleasant surprise on his 19th birthday. He tested HIV positive. It was a rude awakening that he hopes others won’t experience. He says:
“I knew everything – 100 percent – about HIV. I was attuned to the HIV prevention campaigns on South Florida radio, TV and billboards. I was ignoring it… I think [HIV] positive people are a social club who should get the word out through coming out, getting involved, and preventing new members from needing to join this club… I realize that [I might not have gotten HIV] if maybe someone who was my age had told me, ‘Hey, this can happen to you, don’t be stupid. Don’t be so naive!’”

A young woman recalls a poignant farewell to her skeletal, 34-year old uncle just before he died of complications from AIDS in 1994. She was only 14. She coped with this devastating loss by writing poems, contributing to the AIDS quilt, walking in the San Francisco AIDS walk, and wearing a bracelet from “Until There’s a Cure” in his memory. Fast forward to 2009, she writes:
“As a classroom teacher, I have discussed the disease and the impact it has had on my life. AIDS has claimed millions of lives since 1994, and each death is symbolic in that it was a life cut far too short. I hope that in my lifetime a cure for AIDS will be discovered. Until then, I will continue to do all that I can to help fund the research efforts to cure AIDS and continue to speak to my students about the importance of practicing safe sex.” 

A stalwart supporter of the cause writes:
“Eighteen years ago I was married to a drug addict – a very unfaithful man. And I promised GOD if my baby and I did not get HIV/AIDS from him, I would do anything to help those who do have it. So I joined my area AIDS Task Force and have been helping ever since.”

A survivor notes:
“I wear my Until There’s A Cure bracelet in remembrance of my friends who have passed away from AIDS and also to remind myself that I am a survivor of AIDS. If only my friends were still here with me today to see the progress in the treatment of HIV/AIDS, life would be so much brighter… I miss my friends who have passed and hope they know I’m thinking of them each time each time I wear my bracelet. I love you all, you are always be in my heart.”

The Bracelet attracted a twenty-eight year old man to our network of supporters. He writes:

“I had a former co-worker who has a friend that is positive from a blood transfusion, and she was wearing the bracelet. I asked her about it, and she told me about the [web] site… After checking your site and seeing the great support from so many important and public faces, of course, I had to purchase three bracelets to help support the cause: one for me, the other two for two of my friends. Since that day I have never left my house without that bracelet on. Thanks again for all the great work to bring awareness and to help find a cure for such an epidemic that is hurting people all over the world.”

[DDET What is it like to battle this disease for 25 years – through several bouts of cancer and the debilitating treatment …]
What is it like to battle this disease for 25 years – through several bouts of cancer and the debilitating treatment regimens that go with them? With a supportive family, a wonderful team of medical professionals, and a positive attitude, one reader says:
“To make a long story short, I went on to have a pretty darn good life. I was not able to go back to work, so I went on disability and lived with my parents, taking care of them through their last good years, which I was more than happy to do… I now live alone with my dog Gracie, and two cats, Lola, and Tillie, the LOVES of my life. Life is good. There are many chapters of my life over the last twenty five years – too many to go into now – [but] I do believe I AM THE LONG TIME SURVIVOR.”

A proud, Until There’s A Cure bracelet owner shares his coping strategy for dealing with his partner’s disease:
“I am the cook and decided along time ago that cooking healthy, working out, and a positive mental attitude can do wonders. He is doing great, and this October the 28th it will be 19 years [together]. Thank you for all the work and support you give to finding a cure for HIV!!”

The Bracelet helps this man stay vigilant about his health. He writes:
“Three years ago I started dating someone who wore the Bracelet. One day I finally got around to asking what it was for and why he wore it. It really affected me knowing it was for AIDS/HIV because that is a disease any gay man can get in the blink of an eye. I purchased my own bracelet and have never been seen without it. Earlier this year I started seeing someone else and in no time we became very close. One day he sat me down and told me he needed to tell me something. He just found out that he was HIV positive. From the time he knew until the time he told me, he was sure I was going to leave him once I found out. Little did he know that love is strong and can overcome anything. We both wear matching bracelets, love each other, and make sure I remain HIV negative.”

A young woman recounts the pain of losing her father:
“AIDS was the second reason my father left me. I was five when he walked out on my family. In the beginning I only wanted to see him but he rarely came home… It was my senior year of high school when I learned he was sick; he told me he had a type of cancer. Despite missing his treatments, he wanted to come back for my graduation. He did come, but the moment I saw him, I knew it was not just cancer. He was so thin and pale. He had sores all over his body, and he had to walk with a cane. It wasn’t until after he went back to New York that my mother tried to tell me what he had. I told her I knew already, AIDS. I got to see him that November for his fiftieth birthday. There was a big party for him. The following morning an ambulance had to take him back to the hospital. He never left that hospital.”

Another young woman shares her grief:
“He was lost in this world and slept with a woman that was infected. By the time my father found out he had contacted the disease, he turned his life around to God but it was too late. I miss him dearly and wish he was here with me to know my family as well as my sister’s family.”

A sister remembers her brother:
“I have several of your bracelets in support, hope, and prayer that there will be a cure very soon. And mostly in loving memory to my loving brother.”

A 33-year-old man reflects on the AIDS casualties within his extended family. His cousin passed in 1986, an uncle just two years ago. Three other family members battle the disease today. Of the heartache, he writes:
“It continuously keeps in perspective that life is both too short and too precious to waste. I hope that the world understands what it means to protect themselves and to protect others. To practice safe habits and do whatever they can to spread the word. Those outside the walls of this disease may never know what it is like for those within it, and that’s perfectly fine. One thing that everyone should keep in mind is that we all hurt and suffer in one way or another. Keep up the hard work and I thank God, My Lord and Savior, for people and organizations like [Until There’s A Cure].”

A high school teacher grieves the plight of a young man who never caught a break in life. His formative years were marked by instability. His sexual orientation attracted ridicule, hostility, and (ultimately) a deadly illness.
“It seems unfair to me that Larry looked for normalcy and ordinary happiness for all of his 36 years, and never got it. He had a real hunger for everyday life, work and friends, and he was always defending against his crazy relatives, dodging and weaving while looking for a decent life. He died alone… The only comfort I can take is that I was always there for him – a mother figure who offered him just a glimpse of the life he could have had.”

An NYC Internal Medicine resident was touched by AIDS as she launched her career in 1989. It altered the course of her life.
“In 1994, I moved to Fort Lauderdale, set up an HIV/AIDS practice, bought my first bracelet, and am still here, and still wearing that bracelet, day in and day out. I have never taken it off since. It reminds me everyday of all of my patients who have died way too soon, and those who are now living a relatively healthy life. It also reminds me that this disease is not going away any time soon. The education that is supported by Until There’s a Cure is invaluable. With the better treatments that we as physicians have to treat those with HIV, with the knowledge we have about the transmission, there should be NO MORE NEW INFECTIONS. Until EVERYONE is educated, though, the disease will continue to spread. Thank you for all you do to educate those who are at risk.”

In 1993, a vibrant young man was understandably angry when told that AIDS would take his life within 3-6 months. With determination, a positive attitude, able medical care, he persevered.
“I believe that the mind is so much stronger than we give it credit for, and that a positive attitude (no pun intended), is what helped me through this crisis of the early 1990’s. I had an incredible doctor that despite all the bad news, helped me take ownership and put me on the institutional review board for a local hospital that did testing with new HIV/AIDS medications. I joined and volunteered at local AIDS Service Organizations and eventually got introduced to the AIDS bike ride phenomenon. In 2003 I started my own AIDS bicycle ride and today it has brought in and returned 100% of $1.8 Million. My story is one of hope and belief that we can make it better for each other and that it only takes one of us to move things forward, coalesce people together and make change.”

A sister mourns for a brother who never recovered from war.
“Vietnam took him away from me for a couple of years and when he came back he was very different. Growing up a country boy and then being thrown into a world of fighting, death and destruction destroyed his youth; his spirit. I loved him no matter what was happening inside him. But he was misunderstood by many, including family, so after a couple of years he moved to Arizona. He was a hardworking man. He also loved the ladies… When he died a couple of years later [of AIDS], I was devastated. My precious brother and best friend was gone. The ‘system’ was not very kind to him. His treatment was not what it could have been. People ‘like him’ were not given the respect they deserved. I will always wonder, if he had been given the best medical treatments and drugs available, would he have had a better quality of life? Would he have lived a longer life? I will never know.”

A devoted sister writes:
“My dear brother passed on 9-16-91 due to the complications of AIDS at the age of 32. I wear the bracelet as a remembrance of him and when others ask about the bracelet, I tell them about my brother, about the disease, and about his courage to endure. His courage changed my life. Much progress has been made since 1991 with medications and health care for AIDS. Unfortunately my brother was not able to receive these benefits, but it is comforting to know others may… until there is a cure.”

HIV/AIDS is a family affair.
“I’ve been wearing the bracelet for eight yrs, since my daughter was born and her uncle told us he was diagnosed w/ HIV. My family – me, my brother and mother – have been riding in the Harbor to the Bay Ride (125 miles) for three years. We started as a team of 6 and are now a team of 9. We do the ride to support my brother and [the partner] who helps him w/ this disease. I wear my bracelet proudly and anyone that asks I tell them my story! I do this because: ONE PERSON CAN MAKE A DIFFERENCE!!”

A young man pays tribute to a cousin who lost the battle to AIDS at 19.
“She had one of the most amazing laughs I have ever heard. Her laughter could be heard from miles away and it was contagious. Only those close to her knew she was infected with HIV. She was infected as a baby through a blood transfusion and fought her battle courageously until it became full blown AIDS. [She] never complained or asked for pity. She was the epitome of courage and determination. She was articulate, outgoing, and passionate. She loved challenges and always stood her ground. I always admired her boldness and watching her defend her every thought as if she were a lawyer in a court room. Her passion also made her sensitive to others and allowed her to relate to anyone. It was inevitable to trust her, she made it so easy… In her honor our family participates in the AIDS WALK Los Angeles every year since her passing… Nothing can bring [her] back and I will always feel as if I could’ve or should’ve done and/or said more. But I try to remind myself that her outgoing and determined spirit is kept alive through the events we participate in.”

[DDET Steve Davolt of Ben Bridge in Seattle writes: …]Steve Davolt of Ben Bridge in Setttle writes:
“The Until There’s a Cure bracelet for AIDS has been one of our top sellers in all areas of the country. We sell it basically at our cost as part of what boils down to community service. There are a number of ways Ben Bridge has engaged and involved the communities we sell in, including tying in with the American Heart Association, American Lung Association, and breast cancer awareness. We believe in this and our customers have responded. Until There’s a Cure does a great job with advertising in major magazines with celebrities such as Jessica Alba and Tara Reid, and they have been consistent in their promotions. They provide signage for the stores and other merchandise support. They are one of the best examples of how a charitable institution can raise money for a cause through first rate marketing.”