By Jordyn Grubisic
A fundraiser at Hidden Valley Resort early next year will help send a five-year-old boy to the United States of America to receive life-changing surgery.
Jaxon, 5, was born with a 1 in 500,000 genetic medical condition called Congenital Melanocytic Nevus, which are tumour-like malformations that look like moles but are often larger and raised above the skin.
Jaxon’s has a “bathing trunk nevus” which comes with numerous complications with the skin having little to no fat, no sweat glands and no oil glands.
There is also an increase in the risk of melanoma without exposure to the sun.
The fundraiser is a 1970’s themed dinner dance, which includes a six piece band, alcohol upon arrival and a spit roast meal.
It will be on January 18, 2020, and the all-inclusive tickets are $80 each.
Jaxon’s grandmother Helen Taylor is organising the event and said the surgery would be completed by one of the world’s best Congenital Melanocytic Nevus surgeon Dr Bauer.
“The fundraiser is to raise funds to send Jaxon, his mother Alycia and father Clint to the USA so Jaxon can undergo surgery,” Ms Taylor said.
“He will be able to assist Jaxon’s surgeries quicker and more efficiently with his vast experience in the Congenital Melanocytic Nevus field.”
Dr Bauer performs the surgeries on a regular basis and will be able to rectify many of Jaxon’s issues in two surgeries, rather than Jaxon having to undergo possibly another seven or eight in Australia.
The estimated cost for the treatment, including travel and accommodation, is upwards of $60,000.
The family will need to stay in the USA for up to five months, as each round of surgery requires two surgeries, and after-care.
The surgery will involve Jaxon having the Nevus on his back removed – the most uneven in colour and texture of all the affected skin.
“Treatment requires Jaxon having an expander inserted into his back, then liquid placed into the expander through a needle until small good parts of Jaxon’s skin are stretched to form new skin that can be stretched down his back once affected parts are surgically removed,” Ms Taylor said.
The stretched skin contains the glands and fat missing from the affected skin and will allow Jaxon to live a more comfortable life.
Jaxon has already had seven operations in an attempt to remove the Nevus and Ms Taylor said the experience had been traumatic.
“They haven’t all gone quite to plan or been successful, making it very traumatic for Jaxon,” she said.
Ms Taylor said the fundraiser will raise both important funds and awareness.
“Besides the financial aspect these events raise more awareness about Congenital Melanocytic Nevus,” she said.
“When Jaxon was born no-one at the hospital knew what was wrong, not helping the extremely stressful situation.
“Together our family and friends have been trying to change this.”
Jaxon is limited in what he can do and his condition is negatively impacting on his life, including having to move from Western Australia.
“Not having much good skin with sweat glands, oil glands and fat means in the warmer months Jaxon cannot sweat and his body overheats, making life very uncomfortable,” Ms Taylor said.
“Jaxon was born in Western Australia, and as a consequence of his medical condition his parents had to uproot themselves and move to Victoria for Jaxon to be in an overall cooler climate.”
Ms Taylor said there had been substantial support from the community for the fundraiser.
“Hidden Valley Resort have been extremely generous and supportive providing such a unique venue,” she said.
“Hogan’s motel have kindly provided accommodation for the band, and the band ‘What the Funk’ are donating their valuable time for Jaxon.”
To attend the fundraiser, people can book online https://www.trybooking.com/BGNDG.
For any enquiries about the fundraiser contact Helen Taylor on 0447 468 414 or helenandjohntaylor@gmail.com.
