Kellys thrive against odds
By HELEN JACK TARJA Kelly wants everyone to know her family is doing well. Awarded an Our Kids Children's Ward Bravery Award yesterday by Dr Chris Ingall from Lismore Base Hospital,
Tarja said she was flabbergasted by the attention. "We are doing a good job and our kids are still alive against all the odds," she said. Tarja's sons, Sebastian, Matthew and Nathaniel, have a rare disease called Ectodermal Dysplasia, a hereditary condition resulting in the boys having no sweat glands.
This means they are unable to sweat and run the risk of their bodies overheating and endangering their lives. "If they get too hot their organs can cook and their brains can break down as a result," Tarja said.
"So it is important we keep our children calm; the more they stock energy the more they heat up.
"We always pack lots of water and spray bottles and make sure the car is close by."
Lismore Base Hospital paediatrician Dr Chris Ingall said the Kellys were a remarkable family.
"They have weathered some tough times in and out of hospital," he said.
"As well as caring for her family, Tarja is publishing some books to educate people about the condition." More information can be found at www.ozed.org.au.