Search
Hannah Rose Ginion
We reposted this essay in honor of Hannah Rose Ginion who died December 28th, 2014 from globoid cell leukodystrophy (or Krabbe disease)....
Pat is wearing a tuxedo
If you live in Philadelphia, you have seen the billboards on I-76 or the television spots advertising one of CHOP's biggest events: The...
The Best Cupcake Challenge Ever
This year's Cupcake Challenge was the best one ever, and not because of the money we raised. We had a great day but the threat of...
Giovanni's first day of kindergarten
This is the remarkable story of a very special first day of school that is amazing because it happened. Giovanni Price has late infantile...
Super Gav's Story
Gavin at age 4, before transplant. Ali and Gavin, post-transplant, Christmas 2014. My son Gavin Quimby loves superheroes, particularly...
Kindergarten
Back-to-school season is nearing. Supermarket aisles are filled with lunch boxes, and the department store flyers advertise backpacks and...
Finding Our Tribe
Reposted from The Choice Life About The Campbell Family We are the Campbells 3 of our 5 kids suffer from a rare genetic neurological...
One day there will be no patients to treat
Even with an estimated 60 forms of the disease and more types of leukodystrophy being identified by the researcher Dr. Adeline...
Mothering Cal
Originally published in Slate on Mother's Day 2013 I have three beautiful children, the oldest two, who are 9 and 13 years old, excel at...
