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Rett Syndrome: Overview

How to make an appointment at the Rett Clinic
Please have your primary care provider or Children’s Colorado doctor contact the Rett Clinic at (720) 777-4363 or email rettclinic@childrenscolorado.org.


Rett Clinic
(720) 777-4363
rettclinic@childrenscolorado.org

What is Rett syndrome?

Rett Syndrome is discussed at Children's Hospital Colorado
Rett syndrome is a neurological and developmental disorder that primarily affects girls. There are also several variants of Rett syndrome, each with slightly different symptoms and different genetic findings, which can affect boys as well.

Infants with Rett syndrome appear to grow and develop typically at first, but then stop developing and may lose skills and abilities. For example, many children stop using words and vocabulary they have learned. They frequently lose their ability to walk properly and also lose the ability to use their hands. Many children develop distinctive hand movements such as wringing, clapping or patting their hands.

Who gets Rett syndrome?

Rett syndrome is a genetic disorder that usually affects girls. It affects approximately one in every 10,000 to 15,000 live female births in the United States. Most male fetuses with this genetic mutation do not survive until birth.

What causes Rett syndrome?

Rett syndrome usually involves changes in a gene called the MECP2 gene, which occurs on the X chromosome. Even though this is a genetic disorder, the change on the gene is usually new and not inherited from parents.

Variants of Rett syndrome are caused by mutations in other genes, including CDKL5 and FOXG1.

In a very small percentage of patients (less than 1%), there may be a female relative who carries the gene but does not have symptoms of the disorder. There are patients with other genetic changes, or mutations, who have very similar symptoms to patients with abnormalities on the MECP2 gene.

Helpful resources:

  • The Rocky Mountain Rett Association offers local and regional support for kids with Rett syndrome and their families including education and fundraising events.
  • The International Rett Syndrome Foundation provides information about the disease for newly diagnosed patients, and supports research opportunities through fundraising and grants. 
  • The International CDKL5 Foundation provides information about the disease for newly diagnosed patients, and supports research opportunities through fundraising and grants.