Wednesday Worry

Four years ago, we started this journey and 208 weeks have passed. Some weeks were beautiful, many were difficult, and so much has changed for us all.

To commemorate four years of raising awareness, researching, collaborative efforts, injections, appointments, and bravery, here is a glimpse at our first effort to share our story. Here is a repeat of our first entry, Wednesday Worry.


This morning, we injected our daughter with life-saving medicine.  For two years, we have been doing so.  We have lost sleep, weight, and what seems like our sanity.  How can we loathe something that helps our five-year-old walk without pain?  It is our Wednesday worry and one we are 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, we spoke with founder and president of the DADA2 Foundation, Dr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2.  Along with being diagnosed with PAN, 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, 2016 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 our Wednesday worry seem less worrisome.  We hung up the phone overwhelmed by the unfortunate and fateful nature of our call.  With a will, there is always a way…


Stay safe. Be brave.

Leave a Reply

Your email address will not be published. Required fields are marked *