We aren’t the first people to advocate for newborn screening in Australia, but we sure as hell hope we’re the last.
It’s been an incredible 24 hours of support for Move For Oakley, led by the incredible Bianca Stone.
Oakley is always a little star in our eyes. And yesterday, she made sure the rest of the nation knew this too.
We are so hopeful the Qld Government will finally make the change that many families and experts have been advocating for. Let’s help future babies get diagnosed and access life changing treatment before the damage has been done.
Our Patron, Laura Gerber MP, has once again written urgently to the QLD Health Minister following her comments in the media.
I was planning to do a video today to thank everyone for sharing Oakley’s petition and invite you to share far and wide so we can get SMA on the newborn screening test.
Instead, we are back in hospital again. For the 4th time this week.
Today is a reminder that if Oakley was diagnosed at birth, before symptoms were showing, then today and this week (and her whole life) would be completely different.
We would not have to be up all night with nasogastric tube blockages, because she would still have the strength to breastfeed. She would not have a ventilator to help her breathe while she sleeps because her breathing muscles would still be functional. Our families physical and mental health would not have been tested on so many levels. And the list goes on.
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 firstname.lastname@example.org.
Following the launch of our petition, we have begun work on a number of initiatives and campaigns aimed at both raising the profile of SMA in the community, as well as achieving our main objective of adding SMA screening to the routine newborn testing.
One of these steps was to contact the Queensland Health Minister, the Hon Yvette D’Ath MP, to formally request the addition of SMA screening to the ‘heel prick’ test. Our patron, Laura Gerber MP (State Member for Currumbin), recently wrote the enclosed representation on our behalf to the Minister – we’ll keep you updated on a response!