Rare Disease Day

Because today is Rare Disease Day, it seems appropriate to share this post. Four years ago today, February 29, 2008, Parker was diagnosed with a rare disease, Pulmonary Hypertension. This is not an anniversary that we typically celebrate, of course, but I usually find myself thinking about that day around this time each year. It was a life-changing day. It was a day that offered relief, in a bizarre way, because we finally knew what was going on with our sweet little boy. It was a day that led to a different life for Parker than the life we had imagined for him. It was a day that led to changes in our family, in our relationships, in our faith, and in the way we live our lives.

Looking back to that day, I am incredibly humbled by where we are now. Parker is thriving. His PH is stable. He is a happy, energetic, and very active 4 year old! At times it seems surreal that we are planning for Kindergarten in six months, while 4 years ago we were concentrating all our energy on making it through just one day!

In honor of Parker, and all others who suffer from a rare disease, I offer my hope for better medications, a better quality of life, and hopefully someday, a cure.
(look for Parker in the video!)