Rare illness hits Nelsonians
The only three people in New Zealand to be diagnosed with a rare life-threatening illness all come from Nelson.
The phenomenon has led one mother to help start Australasia’s first support group for sufferers of Dyskeratosis Congenita.
Pam Bayard’s two sons, Aaron and Tony, were both diagnosed with Dyskeratosis Congenita (DC) in 2011. It leads to a much higher risk of a variety of life-threatening diseases such as cancer and has adverse effects on the whole body.
Aaron died several years ago and Tony lives in Wellington. On Saturday the Nelson Mail features the story of the third person to be diagnosed with the illness – 4-yearold Gabrielle Stephens from Stoke.
‘‘The odds of all of them being from little old Nelson is too much
‘‘I would hate to see anyone go down the road we went down,’’ Bayard said.
It was only discovered after Aaron died that he had the condition which he lived with for eight years. Tony was diagnosed soon after. The disease affected his lungs which may mean he will need a lung transplant.
Bayard said medical researchers had made vast strides in treating Dyskeratosis Congenita in the last five years, including bone marrow transplants which Gabrielle hopes to undergo with help from her 7-year-old brother Lachlan.
It is also the Child Cancer Foundation street appeal today.
‘‘We would have been lost without them,’’ Bayard said.
Tony was married last year and lives in Wellington with his wife.
‘‘He is doing great. He is trying to get on with life the best he can.’’