Cockayne Syndrome: A Loving Nature is a Symptom


It was my birthday last month and I received a priceless gift:

All the videos from Knox’s life on DVDs!   No gift could equal this.

In this stage of grief, watching the happy times we had with Knox is a great comfort. I love watching each and every video, no matter how short.  I watch videos of Knox often and late into the night.

Now I can pop in a DVD and gaze at continuous, chronoligical footage of him on the big screen: my little precious boy with his cute glasses, spikey hair, and rare syndrome most people have never heard of.

But there’s something about the syndrome I’d like to share with you. It’s something that I’ve only recently been able to embrace.

A loving nature is a symptom.

Yes, it really is. A loving nature is considered an actual symptom of the disease.

Dr. Neilan of Boston Children’s Hospital acknowledges this in the documentary “Love Has Wings” (at approx. 23:40) saying, ” Children with Cockayne Syndrome have a very friendly personality, which almost seems to be a characteristic of the disorder.”

How did I miss how remarkable that is?

Admittedly, I could not think about much when Knox was with us. I was so angry at what was happening and I could not accept CS as a blessing while Knox was with us. I remember one of his specialists advising me to consider how preferable CS was to others illnesses shortly after diagnosis.  I thought he was a nut!  Preferable? How could CS be preferable to anything? The diagnosis was terminal, with a lifespan of only 5-7 years. I could not comprehend what the doctor was trying to say.

I had always thought of symptoms as purely negative things. A ‘symptom’ was something in the body not working correctly. Truly, CS children do have severe and heartbreaking symptoms and that can’t be denied. But the symptom I remember most when I think about Knox now is not his blindness, deafness, microcephaly, or neurological deterioration, but his loving nature.

I look back and watch the videos of happy days and there it is!  In every frame captured from his life I can see it clearly: that sweetness of CS.

How could I have been so blessed?

I would’ve chosen life and health for him, but I wasn’t given that choice.  And that still bothers me. My mood can turn dark quickly when memories of his suffering re-surface.  Sadness can still stop me in my tracks and some memories can still make me feel like I can’t breathe. It’s awful.

I’m reminded of something the old Protestant preacher, Jonathan Edwards, said:

“The same sun that causes the brightness of the day at noon, causes the shadows at 3 o’clock”.

I still don’t understand why it happened, but if the shadows had to fall, I’m thankful God gave me Knox. He was a gift in the greatest sense of the word, and it’s my prayer that his loving nature continues to shine through in each video, in each memory, and in my heart.





  1. I don’t have a “right” to be proud of as I am not your mom, but I am so privileged to know you Scarlett.
    Thank you for sharing about your precious boy.

  2. You’re so right about sweet Knox ‘s spirit. He loved being loved on. I miss him too and would love to watch those priceless videos with you. ❤️️

  3. Stacy Register

    What a precious gift! I love Knox and your family so much! I miss our babies more every day! But it melts my heart every time you share a picture of sweet Knox! Love you❤️

    • Thank you for your sweet comment, Stacy <3 We love you, too, and think of beautiful Grace every day <3 They are having a great time together and we'll see them again!

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