To the Newly Diagnosed Rare Disease Dads…There is Hope

The Rare Disease Day anniversary always makes me think about my daughter Abby’s path to a diagnosis. I realize that at this time exactly 4 years ago, we were an undiagnosed family. We knew something was not quite right but … Continue reading

You Are Loved More Than You Will Ever Know

  I always thought we would be talking about fashion, school, boys and life changes when you were 12 years old. As a first-time parent, I envisioned I would be the kind of mom that you would be able and … Continue reading

What Field Day Taught Me About Acceptance

A recent experience at my daughter’s field day has once again reminded me of how accepting and loving children can be of others who are different from them. Abby’s field day notice came home with the activities listed that she … Continue reading

Why I Do Not Count Down the Days to Summer Break

Ahhhh………..Spring break. In the chill of February, we know it is just around the corner. The thought of a week-long break from school and the possibility of warmer weather help to get us through those cold winter months. We just … Continue reading

To All Of The Teachers That Have Not Given Up On My Terminally-Ill Daughter’s Future

As Rare Disease Day approaches, I can’t help but think about all of the people that have come into our lives due to Abby being diagnosed with Sanfilippo Syndrome. I have spent numerous hours over the past few weeks focusing on … Continue reading

One Of These Is Not The Same, Or Is She?

One of these is not the same. Can you tell which one? They are all sweet little girls, happy, bright-eyed, full of love, full of hope and have a lifetime of memories to make. They are the same, right? Well, … Continue reading