Julia's Journey

Julia-Lynn was welcomed into the world on December 27th, 1997, a healthy bundle of happiness weighing in at 10 pounds 3 ounces. The weeks that followed were marked by the joy of having a bouncy baby on my shoulder and the promise of new life with potential for all the wonder of a long life well lived. The story that follows is what happens when plans are interrupted by the unexpected.

Click the chapter headings below to read Julia's story as it was written when it happened.

Julia's Journey Home

Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8

More about Julia's mom...

To learn more about Krabbe disease and other Krabbe Kids' stories click on the links below to go to other Krabbe-specific sites.

Note that the internet contains much information on the treatment of disease, not all of it accurate. CHECK WITh YOUR MEDICAL PROFESSIONAL TEAM before endeavoring *any* diagnosis or treatment.

Krabbe Connect - Krabbe Connect works towards a day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease. (Note: Julia's mom is is a board member of this organization.)
Partners for Krabbe Research - Partners For Krabbe Research is dedicated to engaging with researchers, clinicians, families, other foundations associated with Krabbe and other Leukodystrophies, to support the need for an effective treatment for patients affected by Krabbe Disease. By supporting research through fundraising opportunities, P4KR will donate funds to researchers, with the hope of wiping out the devastating symptoms of Krabbe Disease.
Legacy of Angels - The Mission of The Legacy of Angels Foundation, a 501 (c) (3) private giving family foundation established in 2008, is to improve the lives of children by working to promote the expansion of newborn screening, and to further education, awareness and research of Krabbe disease and Cystic Fibrosis to provide a better treatment and a cure.
Hunter's Hope - Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, our mission is to strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
Judson's Legacy - Judson’s Legacy is a ministry of faith and hope in suffering. We are committed to sharing God’s love for the brokenhearted while funding leukodystrophy research as a tangible expression of that love.
Krabbe's Kids - Website dedicated to the stories of many krabbe-affected children