Sora, a four year old girl who was born with Leber's congenital amaurosi, jumps for the photoshoot for Jeans and Genes. Source: Jeans for Genes
Ms Kanae Yamamoto is from Japan and the mother of Sora. When Sora was a baby, Sora reacted to light. Ms Yamamoto had never thought of Sora's having any genetic disorder.
When Sora was 3-month old, her diagnosis was made. Ms Yamamoto was so shocked that she doesn't remember how she came home from the hospital with Sora on that day.
Sora's parents and their respective families have no history of visual impairment.
Last year, Sora was in the process of participating in a groundbreaking clinical trial in the UK. But the hope of the family was shattered because of the coronavirus pandemic.
Sora's parents were in the depths of despair. Then, they had an encounter with the Children’s Medical Research Foundation in Sydney and its fundraising arm called Jeans for Genes.
Sora's family decided to become involved in Jeans for Genes and Sora was chosen as one of campaign faces in 2021. Please click here to go to Sora's fundraising page.
This year's Jeans for Genes Day is the 6th of August.
