Rare ill­ness hits Nel­so­ni­ans

Nelson Mail - - FRONT PAGE - CHARLES AN­DER­SON

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.’’

Photo: MARTIN DE RUYTER/FAIR­FAX NZ

Game face: Claire Martin-Hamil­ton, of the City of Nel­son High­land Pipe Band, pre­pares to per­form at the na­tional pipe band cham­pi­onships at Trafal­gar Park yes­ter­day.

Photo: MAR­ION VAN DIJK/FAIR­FAX NZ

Pam Ba­yard has

started up a sup­port group for

suf­fer­ers of Dysker­ato­sis

Con­genita.

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