My 3 peak challenge is to raise money for this gorgeous boy...

Ethan's story:

It took two years to get Ethan's diagnosis of ARX (Aristaless Related Homeobox), a rare genetic disorder. The ARX gene provides instructions for producing a protein that regulates the activity of other genes. This condition affects Ethan's development and at the age of 8 is still at the developmental level of a 6 month old in most areas.

The symptoms (scientists use the word Phenotypes, it's the posh word) of ARX are fairly straight forward and can be found in a variety of other conditions or can even present themselves on their own. In Ethan ARX presents mainly with hard to control seizures.

What is more difficult is understanding ARX itself. It will test your brain with lots of medical jargon. Suffice to say that the mutation of the ARX gene has been shown to contribute to almost all fundamental processes of brain development.

It is incredible how such a minor change in the embryonic development can cause such a drastic change in both the mental and physical development of those with the disorder. But what's even more incredible is how Ethan has managed to overcome so many of the hurdles that come with such a life-limiting disorder. There have been points where it was thought it may not have been possible to bring him home, that the disorder might have won.

There's still uncertainty on Ethan's life expectancy, but we are determined, and so is Ethan, not to let it get in the way of living a happy and full life. Therefore by utilising some of the latest in medical technology and utilising many disability aids, this in turn helps to make his life better.

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