18-YEAR-OLD Gold Coaster Nathan Crowell suffers from a rare life-threatening condition so debilitating, his mother has already started preparing his funeral.
Diagnosed with Congenital Disorder Glycosylation Syndrome Type 1A, Nathan was born with only half of the normal amount of Cerebellum – fluid on the back of the neck affecting most of our bodies functions, motor and brain skills, and the ability to talk.
In this particular case, Nathan’s Cerebellum is shrinking even further, which in turn is worsening his condition and consequently trimming his already short life expectancy.
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Not one of the 800 people reported to be living with the disease around the world have made it passed the age of 30.
Last year Nathan became so ill, his mother Jacky began preparing his funeral and had admitted him into palliative care.
But every Thursday – as part of his day-out program with Life Bridge East – he is joined by his carer Sue and directs work at the construction site of a new beachfront highrise on Dutton Street, Coolangatta.
Confined to a wheelchair, Nathan may not be an actual member of the construction team, however is more an honorary member who has truly united the many different groups working on site. He even wears a “Crane Co-ordinator” helmet.
“The beauty of the construction workers at the site is that they see past Nathan’s disability, to the degree that sometimes he forgets himself,” Jacky said.
“They treat him like an equal, if Nathan was a normal 18 year old, he would pull up to the site in his black ute and be one of the boys, and that is exactly how the team treats him.”
In addition to making such a difference to Nathan’s life with his weekly visits to the site, the tradies have organised a private BBQ fundraiser for next Thursday which will hopefully help get Nathan a new wheelchair and possibly send him on a family holiday.
Anyone wishing to make a donation to the fund raising efforts can do so through the following account:
NAME: G. Easterby B McGuire Suncorp Account
BSB: 484-799 ACC: 60-565918-3.