Altered Travel Folder

I took a plain manila folder and altered it for our upcoming trip.  I’m taking Knox to the UK f0r an annual retreat held for families with children affected by Cockayne Syndrome.  This will be our first time to attend the conference. It’s going to be a special trip so I want everything to be memorable.  I already made a cool butterfly luggage tag for my bag.

I’ll put the hard copies of our flight information, itinerary, etc. in this folder.

Here are some photos of the process…


The butterfly is the symbol for children with Cockayne Sydrome.





Can’t wait for our trip! We’re so excited to meet and hug our many new friends.

Hope you had a great weekend and thanks for visiting!

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New “Stare Cards” For Cockayne Syndrome

Last summer,  I made up some ‘stare cards’  for CS to hand out when I have Knox with me.

I have passed out lots of cards in the last few months.

Yesterday, some other CS moms expressed interest in these on Facebook.  I worked on them all evening, re-working the text, cleaning up the lines, and adding red hearts.

Below is the link to download a sheet of 4 cards.

If you are a CS parent, relative, caretaker or friend,  please feel free to print off as many of these as you need.

Love, Knox and family  :)


Download Stare Cards   ( UK site)

Download Stare Cards   ( US site)