Rett Syndrome is a neurological condition which often affects previously healthy young girls, between their first and second birthdays. This leaves the individual with complex medical needs and multiple disabilities. Most of the girls affected are left without use of their hands, have breathing problems, seizures, anxiety, gastrointestinal and orthopaedic issues and often require a feeding tube. It happens due to a spontaneous genetic mutation and can affect any family at any time.
Rett syndrome is not related to brain damage and through research, it has been shown that these young girls understand and know more than they are able to communicate and show you. They are essentially trapped inside a body which cannot obey the commands that the brain sends out.
In 1999 scientists managed to identify the genetic mutation that causes Rett syndrome and in 2007 they unexpectedly reversed the condition in mice, even in the later stages of the disease. This alone is incredible and hopefully, through hard work and help from people around the world, we can finally reverse Rett syndrome in the girls with the condition.
- 50% of the girls will NEVER walk
- 99% of the girls will NEVER talk
- 1 in 10,000 girls are affected
- 17 girls per day are diagnosed with Rett syndrome worldwide
But there is still hope, Rett syndrome does not define a person.
Rett syndrome IS reversible.
To find out more or to make a donation please head over to reverserett.org.uk
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