Hi Everyone!!

Thankyou all very much for your kind donations (keep them coming!!!).

Deano completed the Marathon in a magnificent 4hrs 23mins 25secs - Brilliant considering the outfit !!! 

I am very proud that Deano did all this for my Hospital Gt Ormond Street and "Thankyou" just doesn't even seem a big enough word to convey how very grateful I am.

Love George

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Thanks for taking the time to visit my JustGiving page.

My name is George and I have a rare skin condition called Epidermal Nevus Syndrome (ENS).

This is a multisystem disease, with potentially devastating consequences. The disease presents as lesions on the skin, which is due to a defective Gene which fails to develop correctly in a developing foetus. The lesions spread and multiply, due to an overgrowth of the upper layers of the skin. They appear very red and inflamed and they often crack and bleed. The lesions can look very similar to other conditions such as eczema or psoriasis but in ENS the lesions develop a thick 'horn' like crust.

However, that it just one of the external symptoms. As it is a multisystem disease, the condition can also develop internally on other organs. It can develop on the eyes, brain, skeletal system, central nervous system and cardiovascular system, as well as produce malignant tumors anywhere throughout the body. I have had a "persistent pupillary membrane" in my left eye since I was born, which has already led to concerns that this condition may develop internally. However, I had an MRI brain scan, which thankfully proved negative for ENS but I will have to be regularly monitored.

My Doctors at Great Ormond Street, have told my Mummy and Daddy that my ENS is the most severe that they have ever seen. I have had various treatments to try and get rid of the lesions, including Pulse Dye Laser Surgery and also most recently, CO2 Laser Surgery. So far nothing seems to have worked. However, I remain a cheerful chappy and cling on to the hope that medical advancements are always being made and that maybe one day something will help me.

I have a wonderful friend called Deano Cox and he wants to help my hospital raise money to help towards funding maybe another Laser Machine and/or to also help by donating money towards medical research.

To do this, Deano will be running in this years London Marathon - dressed as a Penguin!!! (The name of one of my wards!!). This is not unusual for him, as he has previously run as a Carrott (photo in gallery!!).

I would love anyone to help by sponsoring Deano in his quest and in doing so, you will be helping my hospital Great Ormond Street who in return, hopefully will be able to help me.

Thankyou all very much from

George and Deano

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