Wednesday, September 9, 2015

Fact 9

Leukodystophy Awareness Month
Fact #9

This post is in honor of Judson Levasheff (December 24, 2004-November 7, 2007).  Judson was diagnosed with Juvenile-Onset Krabbe Disease at 29 months old and died just shy of his 3rd birthday.  He and his family have a mission:  "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."  (

Watch his story below:

I few days ago I wrote about the types of Krabbe disease and how they fall into 4 categories:  early infantile onset, late infantile onset, juvenile onset and adult onset.  Because my son, William, has the most common early infantile onset, I wanted to focus for a few days on the less common types.  I discussed adult-onset a few days ago, and today I am going to post a little information on the juvenile onset Krabbe Disease (normal development until between the ages of 13 months to 10 years old and is approximately 22% of Krabbe cases). I only have a little bit of information;  there is little known about this phenotype of Krabbe disease.

Juvenile Krabbe disease is characterized by later age of onset and greater variability in the tempo of disease progression. Early normal development is followed by a period of rapid psychomotor regression, although the disease then tends to subside into a slower, but progressive, degeneration.

The disease progresses slowly, often lasting years.

Meet the amazing little boy, Judson, as he battled Juvenile Onset Krabbe.  Judson lived a short life, but continues to educate and impact everyone that comes into contact with his memory.

My blog:

Not too sure how to use these hashtag thingys but I'll give it a go:

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