Local face for Jeans for Genes Day

Sora and her legendary parents. Photo: CRMI

The Children’s Medical Research Institute has named Bondi local, Sora (age 4) as one of the faces of the 2021 Jeans for Genes campaign.

Sora is the first child with genetic blindness to be selected as the face of the fundraising campaign.

Sora was born with Leber Congenital Amaurosis, which means that she is legally blind.

Jeans for Genes seeks to raise money to fund research into genetic conditions like Sora’s, particularly exploring gene therapy, where a defective gene is either replaced or corrected with one simple injection.

Sora’s Father, Eric, told The Beast that her condition means she uses a white cane to navigate, which has made her a bit of a local celebrity.

“Lots of people know Sora because she uses the white cane to walk around. Someone her age using the white cane is very rare, so people take notice, she’s quite famous on Bondi Road, at the Fruitologist everyone knows us,” Eric said.

Sora’s condition was diagnosed before she was six months old when her parents noticed her eyes roving around the room.

Sora’s Mother, Kanae, said it took some time and many appointments with Ophthalmologists and specialists to diagnose the cause of Sora’s roving eyes.

“It was such a blur, so it’s hard to remember exactly when it was diagnosed. It’s so hard to diagnose vision problems in babies because they don’t see very much in the first few months anyway,” Kanae told The Beast.

Jeans for Genes estimates that 1 in 20 kids face a birth defect or genetic disease, like cancer or cystic fibrosis, which is the same as 12 kids born every minute worldwide.

Sora’s particular genetic condition is very rare with her genetic type, but unfortunately also very aggressive.

Sora’s parents have been searching for possible therapies and cures to slow down the degeneration in Sora’s vision when they found gene therapy research being done in the UK.

“We found clinical trials going on for Sora’s gene type in the UK and we were devastated that we couldn’t join the clinical trials because of COVID and other factors” Kanae said.

However, after that, Sora’s ophthalmologist connected with the Children’s Medical Research Institute and discovered their work on genetic blindness.

Eric said that they hope that gene therapy will be discovered that can help Sora’s condition.

“If you get the gene therapy right for eyes, you can use similar techniques to help other conditions in your body.  The actual research helps little kids everywhere,” Eric told The Beast.

Due to COVID-19 restrictions, the Jeans for Genes campaign has had to move online for the second year in a row. But that hasn’t stopped local businesses from putting their hands up to help with Bondi Bread, Taxi Tips, Kemenys, The One that Got Away, Bog John’s Grill and Thai Volunteers to promote the campaign etc.

Eric told The Beast that the family’s wish for the campaign is that the Eastern Suburbs community would be more aware of vision impaired people and donate to the research being done at CRMI.

“This year is very important for us. Lots of people don’t realise that genetic conditions can cause blindness. We want people to know that something that happens and needs research, we want to build awareness,” Eric said.

To donate to the Jeans for Genes campaign please visit,

https://fundraise.jeansforgenes.org.au/fundraisers/sorafundraiser/jeans-for-genes