• The CDK13 genetic mutation was first discovered in 2016. It is so new, that to this day, CDK13 parents often know more about the symptoms of the CDK13 genetic disorder than doctors and geneticists. 

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• The CDK13 genetic mutation is very rare. In 2019, only 43 cases were known worldwide. Today, there are only a dozen cases in the UK, with only one case in London. Many more cases have been identified in Europe, Canada and the USA, in Russia and in South Asia. But the total number still stands at around 300 cases worldwide. 

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• With so few cases worldwide, children and adults with the CDK13 genetic mutation are special indeed. Their needs are unique and require a special approach. 

 

• CDK13 children and adults are affectionate, happy, loving, with an ability to learn. Their prognosis depends strongly on the amount of correct input received from their parents, their school and SALT/OT/PT therapists, and Educational Psychologists.  

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*Please see my Blog article on What to Do when you first get a Genetic Disorder Diagnosis for your child. 

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