This is my first blog post, so please bear with me. I am so excited and proud to be running the Boston Marathon this year for the National Organization for Rare Disorders (NORD). The picture above is my view as I run ~40 miles per week. The artwork is from my son Jonah, who reminds me to run like a hamster. He made that sign for my last marathon. The treadmill is a lot like a hamster wheel. I also have my race numbers from many of my races, a picture of my patient partner, a NORD bracelet that says “stronger”, my confirmation of acceptance into the Boston marathon (!), along with a photo and ribbon to remember a dear running friend who died a few weeks ago. Life is so precious.
February 28 is Rare Disease Day. I think a lot about rare diseases when I’m taking care of my kids, who have been sick lately with very common things. When my son had a very high fever during the worst snowstorm, ibuprofen did the trick. When my daughter was dehydrated from the stomach flu, a visit to the hospital for fluids really helped her. It’s so scary as a parent when your children are sick, so I cannot imagine what it’s like to have a loved one with a rare or undiagnosed disease.