2 year old son Mack suffers from the rare, terminal illness called Spinal Muscular Atrophy. Survivors are now living at 18, and our son could too – but instead he’s being denied surgery because it’d be a ’burden on society’.
We urgently need Premier Jay Weatherill to intervene and reverse this decision.
Our beautiful boy was born with this awful disease, which over time has meant he’s lost the ability to move, swallow or even breathe on his own. He was only expected to live a few months, but has recently celebrated his 2nd birthday. A huge milestone!
In South Australia, support for kids with SMA is shockingly lacking - right now it seems like a death sentence. We’ve been left to plead with the hospital and medical team and searching interstate for life-saving medical equipment. And the surgeries he needs now to put in a feeding tube and make breathing easier has been denied because it’d be a ’burden’.
We were absolutely devastated and shocked to hear those words. Our son could have a future - but instead it seems to save a few dollars they’re refusing to look at how this surgery could extend and improve Mack’s life. They see him as a terminal patient instead of a living person.
In the USA these surgeries mean SMA patients are still alive at 18 years of age, but South Australia is way behind – and now it could be devastating my sonThis could give our boy a future, but he needs this quickly. His current treatment has taken him as far as it can. Living a life with SMA1 is not just a possibility, but a reality. Watching Mack exceed what any of the doctors had foreseen and teaching us a new way of life will continue to be our driving force in fighting for Mack’s right to life