Any discomfort Ben McMillan feels while cycling from Melbourne to Adelaide in the heat of January will pale in comparison to what his nephew,Taylor Lojszczyk, is experiencing.

At this stage it looks like Taylor will be spending Christmas Day in Westmead Children’s Hospital recovering from major surgery instead of being at home in Singleton with his family unwrapping his presents.

The operation will relieve the pressure in his skull.

However, this is not the first time this brave boy has endured an invasive procedure and unfortunately, it will not be the last as he is living with a unique condition described as “Undiagnosed Complex Syndrome”.

After receiving an initial diagnosis of Craniosynostosis at four months of age, three surgeries later his family finally learned Taylor “is the only person in the world with this exact make-up of medical issues”.

So they were not just dealing with a congenital deformity of the infant skull that occurs when the fibrous joints between the bones of the skull (called cranial sutures) close prematurely.

They would also have to battle microcephaly, sensory problems, development delay, extensive vertebral body anomalies, inner ear structural anomalies, dysplastic ears and facial asymmetry, sensorineural hearing loss, conductive hearing loss, swallowing abnormalities, speech delay, growth deficiency, sight loss, strabismus, coloboma of the eye, high arch palate, low muscle tone, mobility issues, cryptorchidism and disc drusen.

Ben has been training 18 hours a week in preparation for the 800.3km ride during which he hopes to raise $24 000 to cover his nephew’s medical expenses and make a donation to the hospital.

“Around Christmas is not the best time of year to be fundraising, however considering the urgency of the surgery and the fact we have not organised a major fundraiser in a while, I knew we had to do something massive,” he explains.

When Ben says “we” he is referring to a group of supportive family and friends who established Simply Loving Taylor Incorporated in 2012 and have conducted various fundraisers over the years.

But this one is “a bit different” and will rely on Ben raising around $30 for every kilometre he clocks up along the Santos Tour Down Under route.

“I have already raised $7000 through putting it out on facebook so now I am getting the message out to media outlets,” he explains.

“I would like to thank my employer Dincel Construction System for their support, Simply Loving Taylor for their ongoing efforts, and everyone who has already made a donation.”

To support Simply on Tour for Taylor just head to the gofundme page.