A grandmother uses quilts to honor a child and give hope to families
A few weeks ago, I got an email from Kate Daniels, a nurse at CHOP whose niece and goddaughter, Emma Daniels died from Krabbe disease (or globoid cell leukodystrophy) at age 2 in 2012. At the May 15th gala celebrating the Leukodystrophy Center of Excellence's creation, the Daniels family received the first-ever Kelly Tough Inspiration Award for their efforts to bring newborn screening to New Jersey. Since 2015, "Emma's Law" requires that the more than 100,000 babies born in
For the Love of Loie
In almost every photograph during the first years of her life, Loie Hammond is smiling. Matt Hammond's favorite picture of his daughter is a beaming Loie seated on his lap. In the photo, it is a bright sunny day at the shore. Until the age of two, Loie seemed just fine, that is one of the cruelties of leukodystrophy, the kids appear perfectly healthy. Loie loved books (especially Trace Traylor's Dogtown Diner) and eating ice cream sundaes and anything that had to do with dog
