Wembley Downs woman on mission to raise awareness of rare genetic condition

Stefania Little (Wembley Downs) and her daughter Samantha (8).
Stefania Little (Wembley Downs) and her daughter Samantha (8).

A WEMBLEY Downs woman has succeeded in having September recognised as Hirschsprung’s Disease Awareness month.

Shortly after she was born, Stefania Little was diagnosed with the disease, which is a genetic condition where nerves are missing from parts of the intestine, meaning stool cannot be passed through the bowel.

She spent most of her childhood in and out of hospital and by the time she was 10 had gone through more than 100 surgical procedures.

“I was always sick; no one really understood,” she said.

“High school was really hard.”

It was this frustration with the lack of knowledge about the disease and not wanting her eight-year-old daughter Samantha to go through the same experience that inspired her to raise awareness.

Mrs Little started a support group and after the Australian Health Department designated September as an awareness month, held the inaugural Walk for Hirschsprung’s disease in Floreat.

“I, along with a lot of other people, got sick of Hirschsprung’s Disease being shoved under a rug,” she said.

She hopes to encourage people to learn more about the disease and also wants toilet restrictions removed.

“I don’t want shops and servos to deny people the use of toilets if they say they really need to go,” she said.

Her idea is for cards to be available to people with medical conditions sometimes requiring immediate use of toilets, certified by the government or health department. Visit www.facebook.com/kickinghd.