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

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

How Report Card Day Reminds Me That Life is Good

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Four times per year. That is 4 more times that I am reminded of how different my daughter is from her peers. The thought of her academic differences is never far from my mind but the looming day brings it … Continue reading

A Not-So-Typical Birth-Mother Letter

You may never know how truly grateful we are for your decision to choose adoption for your unborn baby. There were other choices you could have made but you chose life and another family to raise your precious child. Our … Continue reading