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 Foundation, Dr. 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…
You are a strong and amazing mother to a strong and amazing daughter! Continue to be so positive!!! Love you! Always thinking of you and your family!
Jenn,
It broke my heart to read your post here. I deeply sympathize with you, Kelsey and your family. As bad as it is, at least there is a medication that will at least lessen the effects until a cure is found. To be honest, I am somewhat embarrassed to admit that I have never heard of any of the conditions that you mentioned here, which only proves how important your post is. With your permission, I would like to share it? Please post more so we can follow along and please let us know how we can help! I wish you and your family peace.
Thank you Mr. Lahey. Share away. The more people who read, see, and learn, the better. 🙂