We have always thought that he was one in a million but recently his parents Skie and Paul were told by the Genetics team at the Royal Childrens Hospital that he is literally "one in a million" but not in the same way we imagined.
George has been diagnosed with Xeroderma Pigmentosum, or XP for short, which is an extremely rare genetic disorder in which there is an inability to repair DNA damage caused by ultraviolet (UV) light. It increases the chance of skin cancer by 10,000, and statistically there is a 25% chance it will impact his sight, hearing, neurological and nervous system. Sadly there is no cure for XP.
At 5 weeks and again at 5 months of age George was hospitalised with severe burns to his face after spending very minimal time outdoors undercover. This was initially diagnosed as a staphylococcal infection and treated with a combination of antibiotics. After months of appointments with GP's and a paediatric dermatologist in Melbourne, George was referred for genetic testing where he was diagnosed with XP.
This diagnosis means George can no longer play outdoors, be exposed to UV unprotected windows or even attend any venue that uses UV lighting such as halogen light globes.
The Madderns' are a very active outdoor family and they are ready to tackle anything that comes their way, and are already planning so that George can have a childhood that is as normal as possible.
There are a host of things needed to be purchased or built, some big and some small, to enable George to have as normal a childhood as possible and to enjoy life.
Tinting of all house windows
Purchase UV meters to monitor UV levels
Buy UV protective clothing
Tint car windows and purchase window socks
Install block out external blinds at home
A priority is to have a purpose built shed to be used as a play area, large enough to house things such as a trampoline, swings, slide, basketball ring etc and have it fully plumbed with a toilet and basin.
A garage is also required to be built on the side of the house accessing an internal door. This will enable George to go safely to and from the house to the car.
As you can see there is so much to be done for this little guy, but anyone that has met George knows just how amazingly perfect he is, so full of character, cheekiness and a whole lot of love.
Any donation that you are able to make, big or small, will all add up to going a long way to making some of these things possible.
- Eileen Hages
- Raewyn & Max Hardie
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