Hi! My name is Karen Bennett and I am the USA Parent Liaison. I am a single Mom of two boys, 26 and 14 years old. My youngest son, William, was diagnosed with PURA in 2015. I sometimes get asked what it's like to be a single Mom of a medically complex child. Well, I would have to say it's tiring, educating, enlightening, exhausting, but the most important thing is... it's rewarding. William has taught me so much. He has shown me how to treasure each and every moment an
Dear PURA family:
As most of you have heard by now we have gained another PURA angel. Darren was a funny and a kind soul who will surely look out for and comfort his mother and family.
The passing of a child is simply one of the most tumultuous things that any human being can experience. It is not the natural order of things, and we mourn the loss of their presence as well as the optimism of their futures. Each of our children are special and unique expressions of humanit