About Us

I am Christy, mom to Baylee, age 12, who has CdLS and I’m the author of this blog. I am married to David, and we also have two sons, Lukas, age 16, an upcoming junior in high school and Colton, age 11, a 6th grader.

I do this blog for mainly two reasons–to keep in touch with family and to raise awareness of CdLS.  We’ve been doing this CdLS-thing for 12 years now, and today the internet is the first place new families go to find information about this obscure syndrome that their child was just diagnosed with.  The information available today is wonderful and the CdLS Foundation always has our families’ best interests at heart.  We are sooo lucky to have them.  My hope is that our blog can put a real-life face on CdLS and show others that we are still just an average family, with an average life and that for the most part, we’re a pretty happy family.  When you first find out your child has CdLS, you wonder if your family will ever be happy or have a life resembling anything close to normal.   I’m here to tell you that while it’s not always easy, you can find some normalcy.  The most important thing is to have a sense of humor and heed the very simple advice “don’t sweat the small stuff because it’s all small stuff”.

One response to “About Us

  1. I would love to have Jayden’s World-Living with CDLS Published in Your links.I live in New Brunswick,Canada.I am trying to link up as many sites with information on CDLS.When I was told my daughter had this syndrome.I was sent home to wonder,and find the info myself.Their is only one other family in NB that I know of.I realized the need to find and display this info anyway I could.We raise awareness here on Jayden’s World,by providing links to any sites we can find,providing info to CDLS Foundation in USA,and Canada,We give info on the free downloads of awareness flyer on the US site,as well as DVD.We have people on our site that donate there time with the up keep of the site,as well as taking info out.Please contact me about this matter at kimmiebevans@hotmail.com & feel free to visit our web site http://www.jaydensworldcdls.com password”butterflies”.
    Thank you,
    kimmie Bevans,& Administrators at Jayden’s World-Living With CDLS.

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