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
Tag: Leukodystrophy
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
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
Mother’s Day Surprise
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
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
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!
Even So, Joy 