Wednesday Worry

This morning, I injected my daughter with life-saving medicine.  For two years, I have been doing so.  I have lost sleep, weight, and what seems like my sanity.  How can I loathe something that in reality helps my five-year-old walk without pain?  It is my Wednesday worry and one I’m ready to talk about with whoever wants to listen.

Mary-Claire King changed our lives by identifying the BRCA1 and BRCA2 breast cancer genes that have become household names.  Today, I spoke with founder and president of the DADA2 FoundationDr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2.  Along with being diagnosed with PAN, my daughter Kelsey has the genetic condition DADA2.

We are committed to raising awareness and finding a cure for our children and those we have yet to meet.  As BRCA has become a household name, so should DADA2.  November 11 will mark a historic day as the Inaugural International Conference on Deficiency of ADA2 will bring this vision closer to reality.   Physicians, researchers, and families from around the globe will gather to share stories as well as diagnosis and treatment options moving forward.    

One phone call today made my Wednesday worry seem less worrisome.  I hung up the phone overwhelmed by the unfortunate and fateful nature of our call.  With a will, there is always a way…