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
Category: Death
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
Tori’s ELEVENTH Birthday (and how you can help make a difference)
Today is Tori’s ELEVENTH birthday! It goes without saying that we wish she were here with us. Yet, in her absence, we continue to do what we can to support … Continue reading Tori’s ELEVENTH Birthday (and how you can help make a difference)
Believe Us (and join us)
Unless you’ve experienced something personally, you cannot truly fully understand. That’s why empathy, listening to understand, and humility are key elements of humanity. Hearing how a policy – or lack thereof … Continue reading Believe Us (and join us)
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
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
InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
In early March I was interviewed by InvestigateTV after speaking with reporter Joce Sherman on the phone a few months earlier. She came to our home, where I thankfully was … Continue reading InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
Out of Control
Yesterday was the seventh anniversary of Tori’s death, caused by something we couldn’t stop or control. Yesterday, three sets of parents lost their children to something they couldn’t stop or … Continue reading Out of Control
Our Visit to Forge Biologics
This weekend, our family traveled to Columbus, Ohio in order to visit and present to Forge Biologics – the incredible company with a promising gene therapy for Krabbe Disease in … Continue reading Our Visit to Forge Biologics
Speechless (and a little angry) at the ACHDNC
The ACHDNC decided to not recommend that Krabbe Disease be added to the federal RUSP on Thursday and I’m angry.
Even So, Joy 