Rett Syndrome is a unique and very rare postnatal neurological disorder that most commonly affects girls and has quite often been misdiagnosed as autism, cerebral palsy or non-specific developmental delay. Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2 and this occurs worldwide in 1 of every 10,000 female births.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

The degree of disability varies considerably among affected individuals, so much so that two individuals of the same age can present two totally different pictures of the disorder. The syndrome is not one involving continual degeneration of the brain. However, over time, gross motor ability is likely to deteriorate. Generally, the condition is not one in which there is a continuous downward trend but one where times of improvement alternate with periods of impairment and deterioration.

Our Daughter, Ruby, is one of those 1 in every 10,000 female births that has this disorder.

This September,  I (Craig, Ruby's Dad), will be participating in one of Australia's toughest Ultra Trail Races on the Great North Walk track which runs between Sydney and Newcastle to raise awareness about Rett Syndrome and raise money for the Rett Syndrome Association of Australia.

Want to join me in making a difference? I'm raising money to benefit Rett Syndrome Association of Australia Inc, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me and my family.

To find out more about Rett Syndrome visit Rett Syndrome Association of AustraliaHERE

And, here is a link to the official event page for theGreat North Walk Ultras