Tag: Krabbe Disease

A total of 12 posts are filed under Krabbe Disease
Rare on the Red Carpet: James Kelly for Krabbe Disease
by Hannah Medaugha With Super Bowl XLIX excitement still in the air, it is easy to forget that football’s megastars are real people, too.… Continue Reading
Pittsburgh’s Children’s Hospital Doctor Dedicated to Treating those with Rare Disorders
By Kaitlynn Riely / Pittsburgh Post-Gazette Each year, the Aldrian family makes a long journey. They fly from their home an hour north… Continue Reading
Family Calls for Krabbe Disease Testing to be Included in Newborn Screening
Angel Custer and Anthony Shaffer must plan funeral arrangements for their little granddaughter even as they provide the care they hope will… Continue Reading
Nicole Fights Breast Cancer in the Face of a Dying Son
Nicole Aldrian was diagnosed with breast cancer in November 2012 and is had a bilateral mastectomy yesterday, but instead of worrying about… Continue Reading
Anayas Angels: One Moms’ Discovery of Life and Loss with Krabbe Disease
My youngest daughter, Anaya, was born August 26, 2009. She was perfect, normal and extremely beautiful. She delighted us with her presence… Continue Reading
Haley Suffers From Life Threatening Rare Disease Called Krabbe That Impacts Myelin In Her Brain
In December 2010, Haley was diagnosed at Duke University Hospital with a rare genetic disorder called globoid-cell leukodystrophy, or also… Continue Reading
Krabbe Disease Steals Baby Ginevra Every Ability But Not Her Sweet Spirit
My daughter Ginevra was born the on December 16,2010.  She was a healthy baby girl, without any problems.  At 4 months old, she started… Continue Reading