Judson's Legacy


This is Mason.  He died of a leukodystrophy today.

This journey of losing our Jud Bud has thrust us into a community of people who are TRULY walking (or have walked) through the shadows of death—death of their beloved kin—precious souls born from their own flesh and blood.  I read daily about moms and dads nurturing their disease-plagued sons and daughters with every ounce of their broken hearts, until their sweet children breathe their final breath.

It is absolutely heart-breaking.

Each one of these parents is walking the worst nightmare of anyone who has ever been called “mom” or dad”.

I think of Zoe and Elsie who are beautiful baby girls clinging to life as I type.

I think of Carmen, Jack, Kenji, Makinley, Jaden, Madylen, Ailene, and Ashleigh who, along with Judson, have all lost their lives to Krabbe in the last year.

Before Krabbe began destroying Judson’s body, the realities of dying children were so far off my radar, though when brought to my attention, I would try to imagine the pain and sympathize with the families.  However, I could go back to whatever I was doing before and my life continued as usual.
Not anymore.

I read of these parents and children and it taps into the very core of my own suffering and pain.  I empathize with every aspect of their affliction, and the ways their lives are being absolutely ripped apart.  I can no longer go back to what I was doing before, and my life will never continue as usual.

We are journeying together.  I am journeying with people I have never met before and grieving deeply over children I never knew.

But I had actually met Mason.

Mason was a typical 11 year old boy who was riding his bicycle back in February of this year until the onset of adrenoleukodystophy (ALD) struck soon thereafter.  Mason, his mom Mary, and his sister Kayla were at the Hunter’s Hope symposium that we attended just a couple weeks ago.

I first saw Mason when his wheelchair was being lifted into the van at the lodge.  As he sat their smiling, his legs suddenly began to spasm.  All the memories of my sweet little Jud came flooding back to me.  There were so many leukodystrophy kids there, but it especially hurt to see Mason.  Mason reminded me of Judson—both such handsome boys with beautiful smiles—yet, with similar deterioration of their bodies.  It was as if Mason was an older version of Judson.  Seeing Mason’s legs tremble triggered recollection of my frequent massages of Jud’s legs and how I would hold them to try and minimize the spasticity…it was as if I wanted to reach out and do the same for Mason.

Today Mason was set free from his broken frame…

But his family must now live in brokenness.  I know this brokenness.  I live this brokenness. 

My heart is with Mason’s family.  And it is my prayer that as they experience the literal shadow of death, they will also experience the hope of the Shepherd, who takes the fear out of evil, and restores souls. (Psalm 23)



8 Responses to "Mason"

  1. 34666 says:

    Our children have truely opened our eyes to a whole different world. One that hurts our hearts, but touches our souls.
    I think of you, Jud and your family often. I have been addicted to Judson’s youtube videos as I am in awe of his amazing mind and personality. What a wonderful family you are. I am so sorry you have had to endure the loss of Jud. I know it hurts every day, but maybe, through our similar journeys, we can find some type of comfort in each other while we share our children’s stories.


  2. 36658 says:

    I love the new blog! I was just wondering why I hadn’t been getting notifications from your Myspace blog so I checked it out. This is great! I am so glad to see that you are still blogging and sharing with us all.
    I love this post because it reminds me of the blessings from God even in the midst of such tremendous trials. You are able to understand and minister to countless families now, sharing the hope you have in Jesus and the truth of His word. God has SO enlarged your territory and as horrible as it’s been for you you get to look ahead to changing the lives of other families for eternity. I’m always encouraged and moved by your posts. Thank you for making the effor to share this with us.

  3. Dana says:


    another special little man that left to soon

  4. Kathryn Miller says:

    My son has adrenoleukodystrophy and the story about Mason really touched me. I would like to subscribe and to hear more from people who are carriers and sufferers of this disease and to see how they cope. Thank you and blessings to all.

  5. Mary Kelling says:

    Christina,I was just browsing through your blogs and I came across this one. I had never seen it before. Thank you for remembering my son! Over the years I have had people come up to me and say "I don't know if I should say this or not but I knew Mason."

  6. Mary Kelling says:

    I always feel that it is a gift from God when people remember your child. He did exist, he was important so YES please tell me that you remember him, it makes my heart sing!!! Thank you for making my heart sing tonight!!! Love to you and your family!!

  7. I got chills, Mary. I am thankful that even if it was for just a moment, it made your heart sing. You are a gift, Mary, and so was Mason. There has never since been another leukodystrophy child that reminded more of Judson than Mason…I felt a special connection to your boy! *And I apologize that I had never shared this with you!

  8. Mary Kelling says:

    This must of been the plan and the right time. Thank you!

Share Your Thoughts...

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