My friends son Ellis has MECP2 Duplication Syndrome. A condition so rare that when he was diagnosed they were just handed a 2 page leaflet explaining this.

It was devastating for them to read that there was a very high possibility that their beautiful little boy may never walk or talk, not to mention suffer daily with seizures brought on by epilepsy. They also learnt that Ellis would always face a battle with recurring chest infections that are brought on by the condition...this would be potentially the most serious problem they would face with pneumonia the most common reason for a shorter lifespan, if not treated quickly and efficiently.

Since then they have found out about "The 401 Project". Research was underway into finding a way to reduce the effects of Rett Syndrome, which is another disorder that affects the MECP2 region of the X chromosome. Using mouse models, they made an amazing breakthrough and not only realised that the effects could be reduced, but actually reversed! This meant one thing....a potential cure! The research is now focused on finding a way to control the protein levels in the MECP2 region of a human being, which would not only cure Rett Syndrome, but also all other disorders caused by duplications in the MECP2 region....including Ellis' Xq28 Duplication!

Obviously research costs money so my friends have set up the 'Text Ellis' Campaign  in a bid to raise £100,000 and I am wanting to do my bit.

As they say every penny counts so anything you can give will go a long way!

Thanks in advance xx