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World’s Longest Triathlon for Jaxon Taylor

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JAXON-2

Hello everyone, my name is Jaxon Joseph Taylor and I was born on September 29th, 2014 with a very rare disease called Congenital Melanocytic Nevus (CMN).

My mother (Alycia) had a healthy, ‘textbook’ pregnancy and delivery, but as soon as I was born my father (Clint) and mother immediately knew something was wrong.

The paediatrician swiftly removed me away from my parents to perform a blood test. At first the medical staff thought I was severely bruised. In the words of my Obstetrician who had been delivering babies for decades, he was “baffled”. This was a particularly scary and emotional time in hospital for my first time parents.

No-one knew what was going on, and based on speculation from nurses, my parents resorted to accessing the internet, which overwhelmed them even more!

It would be three long weeks before we could see a specialist, and to my mother and father this felt like torture, not knowing what I had.

This resulted in my parents spending their days crying and fearing the worst, instead of enjoying their time with me. Their world had been turned upside down.

Eventually I was finally diagnosed with a Giant Congenital Melanocytic Nevus, the type I have is called a ‘Bathing Trunk’. This conditions puts me at risk of melanoma, which when contracted, is generally difficult to treat and can be quite aggressive. We also learnt that beneath my Nevus, which takes up a significant area of my body, including almost my entire back, I have no sweat glands, no oil glands and no fat. My skin is extremely frail and sensitive. My parents want the best for me and are trying to make my life more comfortable in the years ahead, from a medical, psychological and

visual perspective. After great research and seeking professional medical guidance, a decision has been made to do a partial removal of my Nevus. Unfortunately it’s impossible to remove the entire nevus, but it’s the best that can be done for now. This comes at a price of many extensive surgeries which can also have complications, as well as the financial worries of how we are going to cover these important expenses.

My parents desire to tell my story to share the CMN awareness to doctors, midwives and general public in order to avoid unnecessary stress and strain on future CMN parents and newborns.

My Granddad, John, is going to undertake the ‘World’s Longest Ever Triathlon’, October 5th to 26th, 2015, in which he will swim 3.9 kilometres in Darwin, run 320 kilometres from Darwin to Katherine

and cycle 1,176.1 kilometres to Alice Springs. This proposed world record will highlight CMN awareness and will hopefully raise sufficient funds to pay for my operations, medical bills, with any funds left over

going towards supporting Nevus Australia for much needed Nevus research.

To make a donation, please log on to the Facebook page identified as ‘Jaxon’s Nevus Journey‘ , or electronically contribute via The National Australia Bank BSB 083-861 Acc 24 798 1787

or donations can be left  HERE

 

 

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