It has been years since I last wrote a poem. A few days ago, this wrote itself in my mind after experiencing being left out (once again), and I decided … Continue reading Silhouettes & Moments (a poem)
Tori’s Tenth Birthday Celebration
On July 30, 2024, Tori would be turning ten years old. We decided this was a great excuse to celebrate her by continuing her impact, and we decided to do … Continue reading Tori’s Tenth Birthday Celebration
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
Public Comments to the ACHDNC regarding Krabbe Disease Newborn Screening
This afternoon, the ACHDNC will vote on whether or not to add Krabbe disease to the federal Recommended Uniform Screening Panel (RUSP). Here are the written comments I submitted: Dear … Continue reading Public Comments to the ACHDNC regarding Krabbe Disease Newborn Screening
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)
How Listening to Understand Transformed My Advocacy Efforts
Hi, it’s been a while. I’ve been very busy with Newborn Screening advocacy/travel for LDNBS, where I am now the Director of Advocacy, and I’m still working on my Master’s … Continue reading How Listening to Understand Transformed My Advocacy Efforts
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
Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP
Good afternoon. My name is Lesa Brackbill and my daughter, Victoria, died from Krabbe Disease in 2016. I can assure you that I speak today from more than just the … Continue reading Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP
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
Even So, Joy 