We have been blown away by the community support for our family, and we heard loud & clear that you wanted to help! We’ve been hard at work behind the scenes pulling together this campaign, which is focussed around our petition (sign here if you haven’t already!).
Our main goal is to see Spinal Muscular Atrophy (SMA) added to the newborn screening test – particularly in our home state of Queensland. We are also seeking to raise community awareness of SMA. Sadly, SMA is the leading genetic cause of death in Australian infants under the age of two, with one in 35 Australians carrying the gene for SMA. Tragically, due to a lack of community education, SMA often develops to a terminal stage before the warning signs are recognised and treated.
We’ll be sharing more about our journey through this website & blog posts, as well as continuing to post regularly on social media. If you would like to get in touch, our contact email is moveforoakley@gmail.com.
Thank you for your support!
This is a crying shame. Who knows what this little girl could have achieved if she was afforded the same opportunities as babies from other States. This could be alleviated by allocating a meagre $10 for each newborn.
This is not rocket science.