FAIREST PAIR DARE TO BE INSTA RARE

TWO local teenagers with albinism are connecting with parents and youths touched by the condition worldwide through their huge online following.

Ocean Grove’s Lucy Carpenter, 17, and Belmont’s Sammy McCombe, 15, pictured, are reaching people globally through their Instagram account, and appear in a book to be featured at Word for Word Festival this weekend.

Lucy and Sammy’s parents were set up to talk to each other about having a baby with albinism when Sammy was born.

The girls later bonded at a camp as kids, and a special friendship was born.

“I’d never known someone that had albinism that was the same age as me,” Lucy said.

In March 2017, the pair launched an Instagram account @lucy_and_sammy, which now has more than 14,000 followers from around the world.

“It was a very spontaneous decision,” Lucy said. “It’s been an incredible experience to share our story with everybody.”

While at an albinism conference in 2017, the girls met author Lee Kofman, who has a son with the condition.

Kofman interviewed Lucy and Sammy, who appear in her book Imperfect: How our bodies shape the people we become.

This weekend, they will be in the audience to listen to Kofman, who as a child underwent several major operations for a defective heart and injuries sustained in a bus accident. She will discuss her book at the Geelong library on Sunday at 10am, as part of Word for Word Festival.

Kofman will appear at the Bodies of Work Panel alongside poet Andy Jackson, who has Marfan syndrome, a genetic disorder of the connective tissue.

The festival is on this weekend. To see the program and ticketing information, visit www.wordforwordfestival.com.au