I am desperate for a good cleansing. For several days my tears have been unable to flow, as if they spring from a well that has run dry and there are none left to be shed.  One might think that this could be good—to have cried every possible tear, however, my emotions sit on the

Jud & Jessie have a new cousin… Abigail Mary JonesBorn July 15, 2008Adopted by Danielle (Drake’s sister) & Marty Jones We are absolutely thrilled for them!!!! What I did not anticipate, as we waited at the Jones’ home for them to drive up with their new baby, was the memories of Jud that would flood

Dear friends, Today marks one year since we were informed that Judson had Krabbe disease.  I vividly recall the phone call from Jud’s geneticist, one year ago today, indicating they had discovered the enzyme causing Jud’s leukodystrophy and that it was indicative of Krabbe disease.  Any inclination toward hope of a misdiagnosis was shattered in

Recently, while bathing Jessie in the tub, my mom asked her what she should use to wash her hair… Jessie responded, “ShamPOOP!” with a big chuckle. She continues to recycle her witty quip, but it gets me laughing every time.  Quite the impressive “first joke” if you ask me!

I could be wrong, but I get the sense that people think I am taking Jud’s death better than Christina.  Yeah, I know comparison is awful.  And, no, I don’t say that with any pride involved.  It’s just that after I tell them how I’m doing, the next response is, “Oh.  But how is Christina

While I was doing internet research last year, when I began to fear Jud had a leukodystrophy, but before it was diagnosed, I had stumbled upon the Hunter’s Hope website and saw a picture from the family symposium that was held the previous year.  I recall looking at all the kids in wheelchairs with deteriorated

I have found myself in Ellicottville, New York this week-a place I had never even heard of, for a reason I never could have imagined. I am here at the Hunter’s Hope Symposium for families who have been afflicted by Krabbe disease.  There are 43 families represented here, each with different stories, but a common