Today I attended the quarterly meeting of the Newborn Screening Advisory Panel of Pennsylvania as I did in April and will continue to do until Krabbe is on the mandatory … Continue reading NBS Advisory Board Meeting, August 23, 2016
Category: Krabbe
Busy Summer and a Much Needed Update
I haven’t blogged much this summer and that has partially been intentional, partially not. Brennan and I have been traveling, working many weekends at MHS, spending time with family and … Continue reading Busy Summer and a Much Needed Update
Will They Wonder?
As we walked through the Hershey Gardens today after locating the tree placed there in Tori’s memory, I noticed all of the bricks and sculptures that had been placed in … Continue reading Will They Wonder?
What Might Have Been
I try not to think about what might have been, cause that was then… We can’t go back again, there’s no use giving in, and there’s no way to know … Continue reading What Might Have Been
Hunter’s Hope Symposium: Thursday
Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent … Continue reading Hunter’s Hope Symposium: Thursday
Meeting with the Physician General
Today I had the privilege of attending a meeting with Representative Angel Cruz and his staff, Dr. Rachel Levine (the Physician General of Pennsylvania), and two other state representatives regarding … Continue reading Meeting with the Physician General
Hospice Butterfly Release
Today, Hospice of Central Pennsylvania held a butterfly release to honor our loved ones who have passed away. Though Brennan had to work, I went to represent our family and … Continue reading Hospice Butterfly Release
When Jordan Hill Visited…
Somehow we neglected to post on this blog about our visit from Jordan Hill of the Seattle Seahawks in April! I was reminded of this when our story appeared on … Continue reading When Jordan Hill Visited…
Even Though…
I love when God speaks to you so clearly through circumstances. If you come across a passage of Scripture once in a day you might read it and then move … Continue reading Even Though…
Fleeting Moments
Before Tori was born, many people told us to cherish the early years because they would go quickly, never to return. After she was diagnosed with Krabbe the moments moved … Continue reading Fleeting Moments
Even So, Joy 