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

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

Special in Every Way

It was in my daughter’s 1st grade school year that we were thrust into the world of Special Education services. IEP, IDEA, LRE, OHI, and LEA are just a few of the acronyms that were introduced to our vocabulary that … Continue reading