In November 2011, just before his 4th birthday, my little boy Ellis was diagnosed with MECP2 Duplication Syndrome, a rare chromosome disorder. Until then, we had always known that Ellis was not achieving the usual milestones a child should, but doctors were unsure as to the reasons why and he was always put under an umbrella of Global Developmental Delay.

Fortunately, our geneticists were eager to find out more and put Ellis forward for a Micro Array Test, a new type of blood test that digs much further into the structure of chromosomes. It was found that he had a duplication of the Xq28 region of his X chromosome.

Even though we finally had a diagnosis, the condition is so rare that all we were given was a two-page leaflet explaining the difficulties the few children that had been diagnosed with this condition face.

It was devastating to read that there was a very high possibility that our beautiful little boy may never walk or talk, not to mention suffer daily with seizures brought on by epilepsy. We 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 we would face with pneumonia the most common reason for a shorter lifespan, if not treated quickly and efficiently.

As you can imagine, after hearing this news my wife Leanne and I, went through many emotions, but luckily have reached a stage where we are now ready to fight! We started by researching the internet for as much information as we could find....and came across a fantastic website "The 401 Project". Here we found that 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!

This breakthrough in research has now encouraged many laboratories to focus more time and effort into finding ways to control the protein levels in the MECP2 region. As you can imagine research costs money and with the condition so rare and unknown, it is difficult to raise funds through the usual government channels.

Huda Zoghbi, from the Baylor College of Medicine, Houston, Texas, who originally discovered the MECP2 gene and it's role, is now looking for funding to start research into the screening of FDA approved pharmaceutics that could potentially regulate the levels of the MECP2. This project alone requires $733,000 to commence!

I can't sit and do nothing when there is a possibility that a cure can be found for my beautiful little boy! To help fund the research, I have set myself a challenge, which I hope will raise £100,000. During the 2013/14 Championship Season, with the help of Chris Page and Gary Leeson, 2 of Ellis' uncles, I will be cycling to each and every Leicester City away fixture, raising funds and, just as importantly, awareness of this rare condition along the way. This may seem a tough task to even a keen cyclist, but the difficulty of the task I face is increased by the fact that I have never ridden a bike more than a couple of miles since I was a child! My training started just 4 weeks ago and I will be taking on my first ride on Saturday August 3 2013…from Leicester to Middlesbrough!!! (174 miles to be exact).

The total mileage to cover all fixtures is over 3500 miles!

All I can ask, from the very bottom of my heart, is for anyone reading my page to send just one text message to my beautiful little boy Ellis and help us to find that cure! Text MECP77 (with your donation:- £1, £2, £3, £5 or £10) to 70070. Alternatively you can make an online donation via this Just Giving page.

All funds donated via Just Giving will go to Reverse Rett, who will use every penny to fund the research projects that we hope will one day cure Ellis' condition.

More information on the challenge and my progress can be found at www.textellis.com

More information on the 401 Project can be found at www.401project.com