Goonellabah mum Summer Nanscawen is desperate for assistance for her son Calem McDavid, 8, who has an as yet undiagnosed condition.
Goonellabah mum Summer Nanscawen is desperate for assistance for her son Calem McDavid, 8, who has an as yet undiagnosed condition. Cathy Adams

Mystery illness has family in dark

IT'S every parent's worst nightmare.

Your beautiful 18-month-old baby boy suddenly has 12 epileptic seizures in the space of 24 hours and life is never the same again.

This is the story of Calem McDavid, now eight, and his parents Shane McDavid and Summer Nanscawen.

They have been waiting in limbo for six-and-a-half years for a diagnosis of Calem's condition so they can access adequate care for their permanently wheelchair-bound son.

"When we finally get a diagnosis we will know what sort of treatment and support we can access from the health system and the community," she said.

In the meantime the family desperately needs suitable housing and transport.

Summer has to manoeuvre her son's wheelchair up and down the slippery stairs in their three-level house in Goonellabah and lift him in and out of the car each day for school.

Calem attends Wilson Park Public School five days a week and the family's current vehicle is unsuitable for modification to carry a wheelchair.

"It's really starting to take a toll on me physically as well as emotionally," she said.

"It's a 24-hour, seven-day-a-week job caring for Calem and my 12-year-old.

"We can't even get home care support because our front steps are deemed to be an OH&S hazard."

Calem cannot speak and suffers from a severe chronic movement disorder relying on a cocktail of 10 different drugs to get through each day.

Summer has taken her son to specialist doctors in Lismore, Sydney and Brisbane and each time the diagnosis has been inconclusive.

The family is pinning their hopes on the results a final round of blood tests by clinical geneticists from the University of Newcastle to finally provide a diagnosis

"Not knowing is the hardest thing," said Ms Nanscawen.

"We just want to know what we are dealing with so that we can have a cry and move on with life."

The family have so far received some help and support from the Cerebral Palsy Alliance and local member Thomas George.

Calem is also part of the Make a Wish Foundation.

But the family have been taken off Housing Commission waiting lists because of Calem's condition and they remain on waiting lists for speech and occupational therapy.

"This is really our last push to try and get some help from our community," said Ms Nanscawen.

If you or an organisation you are involved with can offer help or support to Calem, please call Summer Nanscawen on 0410 815 608.

"We just want to know what we are dealing with so that we can have a cry and move on with life."



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