Debra’s mum Phyllis was told by UK doctors to take her new baby home and do the best she could do until she died. Instead Phyllis became her daughter’s doctor and mother all in one.
Fifteen years later a mother with a new born baby with EB knocked on Debra and Phyllis’s door for advice. The new mum’s doctors had told her the same thing Phyllis had been told 15 years earlier. Back then some doctors even thought EB was contagious!
Phyllis was one amazing woman, she knew nothing would change unless she and other parents of children with EB changed it and from there in 1978 the Dystrophic Epidermolysis Bullosa Research Association was born. The original name has been shortened to DEBRA and is used worldwide to remember Debra Hilton.
Jillyan Hing began DEBRA New Zealand in 1980. She became aware of EB when her niece Shelley Passey was born in Australia in 1979 with the condition.
Concerned there was no support in New Zealand Jillyan set about finding Kiwis with EB, generating publicity to raise awareness and in 1981 the first DEBRA NZ meeting was held in Hastings – DEBRA families have been gathering every year since.
The first DEBRA NZ conference - back in 1981