About CS

Cockayne Syndrome is a rare genetic disorder causing premature aging in children.

Currently, there is no treatment for CS.

The disorder is difficult to diagnose, often resulting in months of testing. The most recent study published on the diagnosis and treatment of Cockayne Syndrome is a research article from May 2016, published by the American College of Genetics and Genomics, authored by Dr. Brian Wilson and colleagues. Please refer to this article for the most exhaustive and current information regarding this rare syndrome. In the medical report, my son, Knox, is featured as exhibits “a” and “l”.

This page was created in order to give visual reference for some common CS symptoms, to help those who may be seeking a diagnosis and to raise awareness of this rare disease.

My son, Knox, was diagnosed with severe CS at 8 months old.  The life expectancy was 5-7 yrs.

In the above photo collage, the premature aging caused by the disease has already become apparent before his 2nd birthday.

The look of this syndrome is even more apparent in this photo progression below, which shows him from age 4 months to 3 1/2 years.  The deep-set eyes and small head (microcephaly) are two common physical characteristic of children with CS.

CS Progression COllage 3

Knox was with us for 42 months, 2 weeks, and 4 days.

He was born on July 14, 2010, and passed away on February 1, 2014.

Some common symptoms of CS:

cs feet

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A child with Cockayne Syndrome may only have a few of these symptoms, and they are seen in differing degrees from child to child. To see a list of more physical signs associated with CS, along with photos of other children, click here. For the most recent and comprehensive medical report on CS, click here.