I found this organization short after adopting my daughter, looking for support and similar experiences.
It has been a blessing over the years, when we went through different stages of my daughter's disease.
It has been my major information resource, a shoulder to cry on, a place where I feel understood.
Along with many other parents, I helped start this nonprofit because my daughter was affected by disease. I've found that working with this organization allows us to get the latest treatment information from those running the studies in the U.S. and elsewhere. We can't wave a magic wand to cure our kids, but we can stay up-to-date with the latest science to ensure they're getting the best care there is. PKIDs helps us to do this.
When my daughter was diagnosed with an infectious disease in the weeks after joining our family through adoption in 2002, I was full of fear for her and for our family. My local pediatrician had little experience with the virus and I didn't know where to turn except the Internet. Luckily, I soon discovered PKIDS.
The information gleaned from the PKIDS site gave me nearly instant peace of mind as I was reassured that my daughter's diagnosis was not a death sentence and that, with a few simple precautions, other family members would be absolutely safe. Reading others' stories, ranging from issues around disclosure to how to deal with blood spills, were incredibly instructive and greatly impact the way our family functions act to this day.
