Donning denim is a fun way to support Jeans for Genes but this year, as part of the Cute Shoot Competition, it became an even easier way to talk about the tough topic of genetic disease.
The Jeans for Genes Cute Shoot Competition was designed for people to send us their cutest baby and fur-baby images to promote the cause and get the public talking about how 1 in 20 children live with a birth defect or genetic disease. The winners will have their image put on a major city billboard to promote Jeans for Genes Day on August 6.
The winner of the Cutest Baby went to eight-month-old Noah who lives with a very rare genetic disease. When he was born Noah had fluid on his lungs and was rushed to neonatal intensive care. Quick-thinking doctors asked for Noah and his parents to undergo genetic testing and they found out he had GM1 Gangliosidosis.
Noah’s mum Jessica said they have been told that his life span may only be between one to two years. It is only a matter of time before he loses his hearing, his vision and that he starts experiencing seizures.
“We were very lucky that we got such an early diagnosis,’’ Jessica said. “Often families don’t find out until the children start having issues around six to eight months old. Doctors told us it is ultra-rare, that there isn’t much research into it. It was quite devastating to hear.’’
While Jessica doesn’t know what the future holds, she knows that the only hope is research at places like Children’s Medical Research Institute where gene therapy offers some optimism.
“There is no treatment, anywhere around the world, so we just take one day at a time and rely on the support of our family.’’
Winner of the Cutest Fur-baby was cocker spaniel Cookie, decked out in a denim jacket and sunglasses. His owner Lindsay said she grew up wearing denim on Jeans for Genes Day at school and wanted to support the cause.
“It isn’t just about a cute photo, it’s about raising awareness of such a good cause,’’ she said.