All babies are beautiful, especially ours.
Cohen syndrome is an inherited disorder that affects many parts of the body and is characterized by developmental delay, intellectual disability, and weak muscle tone (hypotonia). Other features of this syndrome include progressive nearsightedness (myopia).
Diagnosing Cohen Syndrome is difficult at best. It is a process of elimination as many of our children are misdiagnosed due to the rarity and lack of knowledge regarding Cohen Syndrome. Most parents of children with Cohen Syndrome have self diagnosed the syndrome. We have all searched for information on the various chronic conditions hoping to make a connection. Multiple congenital anomalies are just one of the few first diagnoses given to our children.
In the beginning you start to notice small things. Our children do not cry like other babies. They often seem to be chronically ill and have visual issues. Children with Cohen Syndrome do not crawl, roll over or stand along usual timelines.
Our mission is to help you help your child. We hope to help you find resources and supports that are available in your community. If you seek additional information and/ or would like to be contacted by someone from your area contact us at info at cohensyndrome.org
We A.R.E. Cohen Syndrome
We Advocate, Research & Educate families
and professionals about Cohen Syndrome