“Now you know….the rest of the story.” Dave Berry, Columnist
Natalie was not taken by GSD. She died of Legionnaire’s Disease; a tragic encounter with a gram negative bacteria.
I could have started my story here and left out the sad beginnings, but then you wouldn’t know the whole story. As my close friends have read this blog, some of them were not aware of the details of this brief but significant season that colored my life.
The posts that follow tell the story of managing difficult situations in a disease that is relentless yet very livable. The posts will no longer be linear, but written in topics that create branches of a tree; oddly analogous to how scientists define glycogen which is stored in the liver in tree like structures.
With the risk of being abstract, if you take away a bit of wisdom from these stories it would be like cleaving a glucose molecule from a strand of glycogen. In reading further I am hoping my stories will give you the “glucose” you need to move forward…. to grow as individuals in the process of helping your children along their journey.
Dr. Weinstein et. al. are making GSD a manageable disease with a cure on the horizon. It is thrilling to watch this long awaited miracle unfold.