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
Category: Leukodystrophy
Six Years – The Impact
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
Triumph and Purpose After Tragedy
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
Naming the Struggle
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
There are Stories to Tell and Lives to Save
“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
Act 133 of 2020: Implemented!
I’ve already posted about this on social media and on LDNBS.org but it felt necessary to also include it here because this is a monumental day. Today Pennsylvania became the … Continue reading Act 133 of 2020: Implemented!
Signed by Governor Wolf
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
SB983 – PASSED UNANIMOUSLY!
Even just two weeks ago I was seriously questioning the outcome of SB983. I felt so uncertain after it seemingly became a partisan issue in the Human Services committee, and … Continue reading SB983 – PASSED UNANIMOUSLY!
SB983 – Out of House Human Services Committee
I was not adequately prepared for the level of stress and frustration that accompanied today’s proceedings. We knew that the Department of Health had been “shopping around” their amendments and … Continue reading SB983 – Out of House Human Services Committee
SB983 – Unanimous Senate Passage, Now to The House
I’m exhausted. Tuesday was a day of great celebration as SB983 passed the Pennsylvania Senate unanimously. Even getting to the floor was a serious accomplishment and I’m so grateful for … Continue reading SB983 – Unanimous Senate Passage, Now to The House
Even So, Joy 