Though the passage of time in summer months seems fleeting, this summer is one where we are trying to savor the moments we have together in sunshine or rain.
As a week of storm clouds captures our summer days and nights, we have found time to walk/ride bikes in the rain, make slime, play games, and smile despite our recent fears.
Our social media connection to other patients around the globe has recently found several cases of dada2, the genetic condition which manifests as Polyarteritis Nodosa for our Kelsey, in India. Each story is unique and this global connection makes us feel a mix of deep sadness, empathy, and hope.
Each time a new patient reveals his or her struggles, strokes, or current health concerns, a sense of fear strikes internally. I read their stories with tear-filled eyes most of the time, wishing there was more I could say to ease their fears or comfort their frustrations.
The truth can be more sobering than we want it to be at times. This week’s stories and patient truth has certainly done that for our family.
We hope and pray for all families that they will not continue to face these fears and our global partnership will lead to the cure we all desperately pray for day after day.