Why I’m Supporting Jeans for Genes
We are proud to support Jeans for Genes Day again in 2025 - and the incredible work of the Children's Medical Research Institute.
This fundraiser is incredibly close to our family's heart... our beautiful baby boy, Brodie, was born on 19th January 2023 and unbeknownst to us all, he inherited an incredibly rare genetic condition called Ornithine Transcarbamylase Deficiency (OTC).Â
OTC is a metabolic condition which meant Brodie's tiny body could not process protein properly, and he quietly suffered a build up of toxic ammonia through his bloodstream. The ammonia damage to his organs was catastrophic and devastatingly, Brodie passed away at just two weeks old.Â
Our family is forever shattered, without our little boy by our side.Â
The Children's Medical Research Institute are, as far as we are aware, conducting the only Australian research into gene therapy as a treatment for OTC - as it's such a rare condition. The only current ''cure'' is a liver transplant, which comes with it's own high risks is usually not possible for OTC patients diagnosed as newborns.Â
The nationwide statistics are that 1 in 20 Aussie kids are born with a genetic disease or birth defect...That’s one in every classroom!
Your donation will help keep labs running, research advancing, and hope alive for kids and families who need it most.
Together, we can make a difference.
Please join us in sharing this message - your donations are most sincerely appreciated.Â
Thank you!Â
Love Sian, David, Eliza & Brodie xx
We are proud to support Jeans for Genes Day again in 2025 - and the incredible work of the Children's Medical Research Institute.
This fundraiser is incredibly close to our family's heart... our beautiful baby boy, Brodie, was born on 19th January 2023 and unbeknownst to us all, he inherited an incredibly rare genetic condition called Ornithine Transcarbamylase Deficiency (OTC).Â
OTC is a metabolic condition which meant Brodie's tiny body could not process protein properly, and he quietly suffered a build up of toxic ammonia through his bloodstream. The ammonia damage to his organs was catastrophic and devastatingly, Brodie passed away at just two weeks old.Â
Our family is forever shattered, without our little boy by our side.Â
The Children's Medical Research Institute are, as far as we are aware, conducting the only Australian research into gene therapy as a treatment for OTC - as it's such a rare condition. The only current ''cure'' is a liver transplant, which comes with it's own high risks is usually not possible for OTC patients diagnosed as newborns.Â
The nationwide statistics are that 1 in 20 Aussie kids are born with a genetic disease or birth defect...That’s one in every classroom!
Your donation will help keep labs running, research advancing, and hope alive for kids and families who need it most.
Together, we can make a difference.
Please join us in sharing this message - your donations are most sincerely appreciated. Thank you!Â
Love Sian, David, Eliza & Brodie xx
