Sometimes I sit and stare at Kelsey in amazement. I am continuously amazed by her beauty, her wisdom, and her poise. More often than not, it is because aside from being truly dazzled by the fact that she is my daughter, I am in amazement that she could possibly have this hidden condition that so few people can truly understand.
Dr. Chip Chambers helped explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala. I will share his speech in the near future, but one of the sentiments he shared has particularly stuck with me.
How would you feel when your five year old is having strokes and the doctors cannot tell you why or tell you what to expect next?
Having lived through that pain while my daughter was three and living that question on a daily basis, I can tell you the answer. The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.
For those of you who attended our Gala, thank you from the bottom of my heart. No parent wants to live in fear or to feel helpless for their child. Your support, generosity, and love helps my family feel more hopeful than helpless.
We doubled our efforts from last year and will continue to fundraise, speak out, and help anyone else who finds themselves affected by PAN and dada2.
Our Third Annual Gala will be even bigger and better. Save the date, November 23, 2018.