Judson's Legacy

Cling To What Is Good

The day of Jud’s emergency MRI.

Today, June 13th, marks three years since I took Judson to our local medical center with concerns for his health; the words from the doctor still ring in my ears, “This is likely very serious.  We need to do an emergency MRI.”

And from that moment our lives were to be horrifically changed forever…because of Krabbe disease.

I hate Krabbe disease.  I hate it with every ounce of my being.  I hate what it did to my little boy.  I hate what it does to other children.  I hate how it slowly sucks every bit of bodily life out of a child while all who love them are tormented as they must powerlessly watch.   And I hate how it leads to a bottomless well of pain.

As I see it, Krabbe disease is right out of the pit of hell; it is so evil, wretched, heinous, wicked, and dreadful.   It intimately reminds me that the enemy prowls around like a roaring lion seeking to devour and destroy (1 Peter 5:8) and he would delight in seeing Krabbe disease demolish families, faith, and hope.

But in actuality, experiencing the evil of Krabbe disease has caused me to hold more tightly to the One who is good, to the God who loves and cares for me.  Although it has been three years since that horribly fateful day, and my life has since been lived in a sea of pain, I am reminded that this suffering is but for a little while (though it doesn’t usually feel like it) and some day, the God of all grace will call me into eternal glory, just as he did my Judson, and the Lord himself will restore me (1 Peter 5:10).  But until that glorious moment, I am resolved to hate what is evil and cling to what is good .

Thus, I hate Krabbe disease, but I cling to God!


This is some uncut, raw footage of Jud, just 10 days before he died (keep in mind he was running in our park just 6 months prior).  It is incredibly difficult to watch but it shows the heinousness of Krabbe.  You can observe how Judson’s mind is intact as he responds to my voice, but he is unable to see, speak or move. 

Do you hate Krabbe disease too? Please help us raise awareness of this wretched disease!


*This post is dedicated to all the families I know who have lost children and grandchildren to Krabbe disease. 

13 Responses to "Cling To What Is Good"

  1. Sam Squirrel says:

    It was a wickel squirrel that Jud was thinking about, I just know it was.

    Hey, thanks for the video, Miss Christina. Just when you think you pretty well know most about Krabbe you learn a lot more just be watching this video.

    Have a nice day,

    Sam. XOXOX

  2. Wendy Heak says:

    Oh Christina, that video is so hard to watch I am in tears, no child should have to suffer like, I’ve just finished Judsons book and it was hard for me to read I thought I knew Judsons story from reading it online but I didn’t. I didn’t realise that Judson suffered sooo much in such a short time and it must have been unbearable for you and Drake and the rest of the family to watch him.
    Continually praying for you all.
    Much love

  3. jessica says:

    That video broken my heart. How cruel. You could see, in Jud’s eyes, the bond you two had.

    I don’t even know what to say, there really are no words.

    Prayers to you, until the day you hold your boy in your arms again.

  4. kristy says:

    The title of your entry for yesterday hits close to home for me today…thanks for encouraging me!!


  5. Lora says:

    Oh Christina~ I know all too well what it’s like to watch my own boy suffer and lose ability after ability. It’s heart wrenching. What a reunion that will be when you are finally reunited with Judson healthy and whole. There will be no more dying, tears, pain or disease! I can’t wait!!! ((HUGS!!))

  6. aunt sue says:

    Heart wrenching is right, Christy. Tears still come . . . love, sunt sue

    but God . . . is good.

  7. Kristy says:

    On a light note, Judson made me yawn! But honestly Christina, I am so sorry you had to endure watching him in pain for so long…I can barely handle the 8 minutes here. Thanks be to God that he is no longer in pain and all the many moments of suffering are but a blink of an eye to him now in light of eternity. You are such an amazing mama! Judson was, and is blessed.

  8. Ann says:

    Oh Christina I too hate Krabbe’s disease! The video made me cry

  9. Samanta says:

    The tears in my eyes can barely let me type these words… what a mama you are Christina! to endure this evil suffering of your beloved boy! I cannot describe the pain I have in my heart for what Judson went through… God is big and chose a wonderful mother to have a gift as Jud!
    I have no more words… my heart and soul can only say thank you for opening your life this way…


  10. Amy Moore says:

    Oh Christina,
    Has I sat here now,tears roll down my face.I so hate Krabbe Too..I can truly see the bond you have together..You are so strong to have to sit there and watch Judson suffer this much pain..But he is no more pain..He is living Life to the fullest up in Heaven.One Day you all will be united..God Bless You!!

  11. Rebekah says:

    Oh Christina! It hurts to see him suffering! I cried as I watched the video… but even after Krabbe had taken such a toll, you were absolutely right: Judson is SO handsome! You truly are a blessed mom! Such a beautiful smile. My heart aches for his suffering and yours…

  12. Christina~When I get home and see Judson,we are going to be drinking in God’s love.We will be so "filled" with HIS love….we won’t even care about water. I can’t wait to hold him and love him!!!I’ll pass him to you when you arrive!!!
    Love you so much~
    Jean (and Gary)

  13. susan says:

    Oh this video was so difficult to watch.

    I can think of few things on earth more deserving of genuine hatred than a disease like Krabbe.

    Christina, what a beautiful smile!! I loved seeing his smiles in response to your words. Despite the ravaging of the disease, it is SO clear that Judson felt completely loved – ADORED. It’s so easy to see in his face. He was treasured and knew it deeply.

    I believe you are right – that Krabbe is straight from the Pit of Hell. And praise God that that is where it will return someday forever.

    And YOU will be with JUDSON for all eternity! Blessed assurance!!

Share Your Thoughts...

This site uses Akismet to reduce spam. Learn how your comment data is processed.