Dear PURAperfect Family: It has been about a month since I first got to meet a number of you, and less than 5 months since joining the PURA Syndrome Foundation. As I sit here at a computer screen, in a quiet house at the end of a day, it is finally starting to sink in how much has changed in my life in that short time. Some of the most profound life changes that I'm experiencing are involving the Foundation itself. Notably, the Foundation has successfully completed the recent
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
The Road to Philadelphia From Ohio One of the unique blessings of receiving a diagnosis is finding your Tribe. With a disease as rare as PURA, the longing for its name is replaced by the desire to connect with the only people on Earth that know what those four letters mean. Two years ago and again in Philadelphia, I will be blessed to meet the people that I had spent my daughter's whole life looking for. The lonely nights spent awake worrying over my motionless babe. Post af