September is both Newborn Screening Awareness Month and Leukodystrophy Awareness Month. I had the privilege of writing two guest posts this year, instead of using my own blog and social media accounts to help reach a new audience.
Tag: Family
Each Chapter Shapes the Next
It was an honor to speak to the new class of graduate students in the Speech-Language Pathology Program at Lebanon Valley College today. This is the first time I have … Continue reading Each Chapter Shapes the Next
Necessary but Unwanted Conversations
It’s been a heavy few days in our home. For months now, off and on, Isaiah has been asking to talk to baby Tori. To call her. To see her. … Continue reading Necessary but Unwanted Conversations
If you’re new here…
Welcome! No matter what brought you to my little corner of the Internet, I hope you find something interesting here as you get to know me. Quick facts: If you … Continue reading If you’re new here…
New Adventure Ahead
I have spent the past ten years advocating in honor of Tori, to build a legacy for her, and I have succeeded. Because of Tori, babies in Pennsylvania are screened … Continue reading New Adventure Ahead
Looking Back at 2024 (Our Christmas Letter)
2024 was a year of joy, discovery, and change for our family. Let’s start with the fun parts: Family Adventures We saw a solar eclipse (April 8) and Northern Lights … Continue reading Looking Back at 2024 (Our Christmas Letter)
The Way Family Should Be
Note: this post is discussing my family and no one else. The praise of my family is not a slight to anyone else, though I believe it’s an example we … Continue reading The Way Family Should Be
From Diagnosis to Determination
Today marks nine years since Diagnosis Day, the worst day of our lives by far. There are no adequate words to describe the utter desperation and helplessness we felt as … Continue reading From Diagnosis to Determination
Looking Back at 2023 (Our Christmas Letter)
It has been a wild year for our family in many ways, both good and less-than-ideal. 2023 was filled with new challenges, most of which we have chosen to not … Continue reading Looking Back at 2023 (Our Christmas Letter)
Community Stories: Tori
Last November, Forge Biologics (the company with a gene therapy for Krabbe Disease in clinical trials) came to our home to film our story, and it was released today. It … Continue reading Community Stories: Tori
Even So, Joy 