Skye Wellesley

About Skye

Rett Syndrome

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In June 2008 Skye Wellesley, aged one, was diagnosed with Rett Syndrome.
Not being aware of the existence of this condition at the time, the horrific days and weeks that followed we, her family, discovered what it means to us and to about 2,000 other families in the UK.
Rett Syndrome is caused by a sporadic genetic mutation on the MECP2 gene located on the X chromosome. This microscopic change in the structure of chromosomal proteins has an overwhelming impact on the life of the 1 girl in 15,000 statistically around the world.
Most obviously, Rett chronically slows these girls neuro-development, very few Rett girls will ever speak and only half of them will walk. Behind the physical incapacity, there are also additional problems as Rett girls are prone to scoliosis, difficulties with digestion, epilepsy and fits of extreme anxiety.
We set up the charity to fund research into finding a cure for Rett. There has been very significant progress towards that goal over the last four years and I'm pleased to say that Professor Adrian Bird at Edinburgh University is at the forefront. Research can be very focused as the gene, MEPC2, that causes Rett was pinpointed ten years ago. Finding a cure for Rett would bring so much happiness to many girls who are prisoners within their own bodies, plus it will help to find a cure for other genetically related disorders. Thank you
Sadly Skye passed away on 12 Dec 2021. She was 15.

See a short (5 min) video

This video by Dad, Adam Wyndham, shows clearly how Rett syndrome reveals itself and develops. Many thanks to Adam and his family for their permission to share the video.

  • Rett Syndrome

    First described in 1966 by the Austrian doctor, Andreas Rett. It could occur in any family and affects approximately 1 in 10,000 girls born each year.

  • Almost all cases of Rett syndrome are caused by a mutation (change in the DNA) in the MECP2 gene, which is found on the X chromosome (one of the sex chromosomes). This gene contains instructions to make a particulax-chromosome1 175r protein (MeCP2) that is vital for brain development. The gene abnormality prevents nerve cells in the brain from working properly. Almost all people with Rett syndrome have no history of the disorder in their family, and the mutation has happened spontaneously.

  • There is currently no cure for Rett syndrome.
    Treatment for the disorder is focused on the management of symptoms, requiring a multidisciplinary approach. However, in 2007, Dr Adrian Bird at the University of Edinburgh showed that Rett syndrome was reversible in laboratory mice. Read more about this here. It is possible that Rett syndrome could be the world's first curable neurological disorder and could also provide the key in helping with disorders such as Alzheimer’s, Autism, Bipolar Disorder, Parkinsons and Schizophrenia. But clearly mice are very different to humans and much still needs to be done to progress this work into something that is safe and effective for people with Rett syndrome to use.

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