Please Premier: don't deny my terminally ill 2 year old surgery that could extend his life - review the treatment of SMA patients
This petition had 34,901 supporters
My 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 - but Mack's mind remains unaffected, developing the same as any other child his age. 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 and keep beds open for more enabled bodies 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 for my son
This 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.
Please Premier Weatherill, consider our situation - don't deny our beautiful son surgery that could extend his life. Sign our petition urgently.
You can learn more about Mack via this link -https://www.facebook.com/MacksattackagainstSMA
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