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Wednesday, April 24, 2013

Closer to a CURE


For the last sixteen years (since my children's diagnosis) all of my most important choices have revolved around this one, larger than life question, "Will this bring us closer to a cure?"

Asking myself that question has brought me clarity and focus in times of uncertainty, and believe me there have been many.

I think as parents, we're tried and tested on a daily basis on how to best care and look after our families. In our situation, the kids' medical care has always had to take a front seat. My children are seen regularly at St. Jude Children's Research Hospital. They are a cutting edge research hospital, and being a patient there means that you agree to take part in studies that the hospital is conducting.

When asked if we will take part in a particular study, my "clarity" question comes in handy. It helps me to focus on what's most important for my children. If I feel that the study is too invasive or just not right for my children, naturally, I decline. If we all decide that a certain study they ask the children to participate in could benefit, or even possibly bring us closer to a cure, then we jump on board.

My children have beaten some incredible odds and I thank God every single day. Do I believe that one day my children will be cured of HIV? I do.

During our last visit to St. Jude, we were talking with one of the workers. The kids were enrolled in a "survey" study in which they had to answer questions about their general knowledge of HIV. One of the questions they were asked was, "Do we have a cure?"

I smiled when my son answered, "Yes, of course. We just need to find it."

His words just may have been prophetic. Read this amazing story and you'll understand what I mean.
Once thought to be an impossible feat, doctors at the University of Minnesota are attempting to cure a six-year-old little boy of both his HIV and cancer. He underwent a very difficult transplant (the first of its kind) just yesterday, and now will be in isolation for the next 100 days while he recovers.

I don't usually ask my blog followers for favors, but because I believe so strongly in the power of prayer, I'll ask that you pray for this child, his family, and the doctors who are attempting to cure him of both his HIV and cancer. This "first of its kind" transplant could lead us toward what my family already believes possible...a cure for HIV.

Monday, April 8, 2013

Blue Skies Ahead


Stepping out on the Big Four Bridge yesterday afternoon. 

As my daughter and I strolled across the walking bridge I had a moment to reflect on our remarkable journey.  I say remarkable not because of our circumstance.There's nothing noteworthy or remotely remarkable about being HIV positive; what would be remarkable, though, is to live to see the end of HIV. I dream of a world cured of AIDS and there are doctors and researchers believing for the same, but there is work to do. 

As the media buzz over the Mississippi baby functionally cured of HIV settles, we are left with more questions than perhaps answers. One of the biggest, "Can we replicate these same results in others?" 

The short answer is, yes, of course we can. We now know that HIV can be stopped (in some individuals) when caught early enough. This holds true for early HIV exposures treated prophylactically, as well as babies born to mother's infected with the disease. So, what does all this mean? It's a giant step toward one day ending AIDS. 

Already, with just the medicines we now have available, we could end mother to infant transmission for good.  Anti-virals are an amazing class of drugs that drive the virus to levels that are so low that passing the virus, even in vitro becomes highly unlikely. Unfortunately, the majority of women who pass the virus onto their babies are unaware that they are carriers until it's too late. Testing and treating are key. As a mother, and a proud Ambassador for The Elizabeth Glaser Pediatric Foundation  I encourage you to get involved. AIDS isn't over yet. We still have a long road ahead, but we will get there.