While my dad was still in Pennsylvania with us, I came up with a plan to fly to California for a week over Mother’s Day weekend as a surprise for … Continue reading Mother’s Day Surprise
Category: Krabbe
NBS Advisory Board Meeting, April 19, 2016
Yesterday, I (Lesa) had the opportunity to attend the quarterly meeting of Pennsylvania’s Newborn Screening (NBS) Advisory Board. These meetings are open to the public but members of the public … Continue reading NBS Advisory Board Meeting, April 19, 2016
Call to Action in Pennsylvania
Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done … Continue reading Call to Action in Pennsylvania
Krabbe and The Gradual Loss of Abilities
(I started this post a month or so ago and saved it as a draft…I feel it is still an informative post so I finished it, though I changed some … Continue reading Krabbe and The Gradual Loss of Abilities
Transparency in Grief
Several people in our lives have expressed concern that we are suppressing our grief or being “brave” for the world instead of being mournful in the wake of losing Tori. … Continue reading Transparency in Grief
Tori’s Celebration of Life – Part One
We asked several of our photographer friends to help us capture Tori’s Celebration of Life on Saturday so that we wouldn’t miss a thing. Here are some of the photos … Continue reading Tori’s Celebration of Life – Part One
Update: The Wall Project
As most of you know, we had set-up a GoFundMe a month ago to raise enough money to make our main living area more accessible for Tori – both for … Continue reading Update: The Wall Project
Location Change for Tori’s Celebration!
We quickly outgrew the original space at The Hotel Hershey so we had to scramble to find a new location. God provided a PERFECT one for us today! https://www.facebook.com/events/253286948345772/ … Continue reading Location Change for Tori’s Celebration!
The Joy of the Known
I realized recently that part of our inner joy and peace comes from the knowledge that we don’t have to wonder anymore when she will be taken from us. We … Continue reading The Joy of the Known
Laying Tori to Rest
O death, where is your victory? O death, where is your sting? For sin is the sting that results in death, and the law gives sin its power. But thank … Continue reading Laying Tori to Rest
Even So, Joy 