Aisling Gaffney

Kids just want to be kids, but instead of playing sports with their friends or catching butterflies on a sunny day, kids with genetic diseases are getting liver transplants, taking dozens of medications, or getting their next dose of chemotherapy. It shouldn’t be this way. By donating through Jeans for Genes, you can help the scientists at Children’s Medical Research Institute find cures, so these kids can go back to being kids.

No child's life should be cut short. We will do all within our power to change "incurable" to "curable".

 

We have over 50 people within Advocare so that means there is a good chance that several staff have or know children that face a genetic condition in their every day life.  The daily challenges that are part of their life prevents them from enjoying things that other children get to enjoy, sees them spend a considerable amount of their life in hospital undergoing treatment or being unwell and has a profound impact on their families and carers.

 

The posters you see around the office are of Tanya’s granddaughter Scarlett, who lives with a very rare metabolic disorder.  She is one of a handful of kids with her condition in Australia and the only child in WA.  Everyday is a rollercoaster for Scarlett, battling her diet, her condition and her medications.  She is a happy,  almost 4 year old,  most days but up until 6 months ago spent on average 60% of her life in hospital.  A new medication is making significant impact on her life, its not a cure by any means and does not eradicate the rollercoaster but it lets her stay home more and progress with her development that is significantly delayed.

 

More access to clinical trials and more access to new drugs is what is needed for all children with a genetic disease, these are often limited in Australia.  

Help us by enjoying some morning tea in the Perth office, making a donation or buying a raffle ticket to make a difference with research and finding those cures that are so desperately needed.