Today is a big day for the Krabbe community! The committee (HRSA) that decides which conditions are added to the federal Recommended Uniform Screening Panel (RUSP) voted UNANIMOUSLY today to … Continue reading Krabbe Moved Forward to Full Evidence Review
If you had asked me three days ago if I would ever go to grad school, I would have said no. I’ve thought about it off and on since I … Continue reading A New Chapter Begins
I saw a post on Facebook today that made me feel many things all at once. It was a post by a mom in a large Facebook group known for … Continue reading Comparison in Motherhood
When Tori passed away, Brennan and I made a commitment to always making March 27th a special, joy-filled day. After all, she’s having fun, so why shouldn’t we? We usually … Continue reading Six Years – Celebrating Tori
Six years ago today (at 9:05am) we said farewell to our beautiful daughter. That day, we went through the motions of implementing the decisions made months before – unwanted tasks … Continue reading Six Years – The Impact
As the sixth anniversary of Tori’s death quickly approaches (Sunday), and with the passing of my friend’s daughter Calliope yesterday, I have been reflecting a great deal on the beauty … Continue reading Triumph and Purpose After Tragedy
I’ve been struggling for months. Even worse, it has taken me until very recently to put a name to the struggle. About two weeks ago I figured it out and … Continue reading Naming the Struggle
It’s been almost six years since I wrote this post about the playroom we created for Tori in the midst of medical appointments and uncertainty. It was a project of … Continue reading New Playroom and Redemptive Joy
“I know more about Krabbe than I’ll ever know about Collin.” Kevin Cushman My friend, Kevin, made this statement at a recent Krabbe panel in which we both participated and … Continue reading There are Stories to Tell and Lives to Save
In September, I was told it was “improbable but not impossible” to see SB983 progress because of our many delays (and a global pandemic). I took that as a challenge. … Continue reading Signed by Governor Wolf
Even So, Joy 