In November of 2015, Sam was looking forward to his upcoming school and amateur swimming club championships. He attended his school disco on the last Friday of the month – running around, having fun with his mates. He was, for all purposes, a bright intelligent nine year old boy, fit, healthy, energetic and with the world at his feet.

He was struck down with a rare neurological condition called Transverse Myelitis which, by the Sunday afternoon, was ravaging his spinal cord and parts of his brain stem and which saw him by 7.00 am on the Monday in an induced coma, fully paralysed and on a life support ventilator breathing for him.

Life had been fully upended for Samuel and for his immediate family with so many more family and friends traumatised by how this fit, healthy and loving young boy was seemingly overnight robbed of so much capacity.

In the months it took to reach a full understanding of the extent of his disability, he endured multiple bouts of pneumonia and lung infections, multiple lung collapses as his lungs just didn’t seem to want to fully inflate. He suffered the torturous chest physiotherapy sessions needed to clear his chest every day and sometimes two or three times.

And the full understanding of his disability didn’t come all at once. Bit by bit, the news got worse and just as it was thought that no other news could possibly come that would be as devastating as the last, it would come. Samuel was fully paralysed apart from a few muscles in his right foot/leg and the smallest of movement with his left ankle/foot. Motor control from his brain stem and C1/C2 vertebral segments was lost. Receptive sensation (although a bit out of whack) was thankfully intact meaning – technically – his condition is not quadriplegia but that of Quadra paresis. He was on a life support ventilator via a tracheostomy and in all likelihood, would be for life.

While his vocal cords are largely functional, the same cranial nerves (9 & 10) that controls these also control his epiglottis but with paralysis for the latter rendering his airway susceptible to fluids and other nasties pouring in to his wind pipe. Thus the continual chest infections were explained.

On top of this, Sam’s ability to swallow was also destroyed so he couldn’t protect his airway by swallowing any secretions – they just cascaded down his windpipe, too.

And Sam’s (nine-year-old) attitude? He was heard remarking to his sister very early on words to the effect of: “It’s happened. It sucks that it’s happened but it has. There’s nothing we can do about it. We just need to move on, move forward.” Nine years old at the time and he could come out with that! This is one of the reasons he has become an inspiration to those that meet him.

Sam will not be the only home ventilated child in Queensland. Other home ventilated children and their families also need support and Sam is keen for you to also be mindful of their needs as his desire for others to not be disadvantaged typifies his nature.

Sam will require long-term two trained people close by to him 24/7. These people will need to be trained in use of the ventilator and trained in the emergency treatment or replacement of the tracheostomy tube (“trache trained”). They will be required to evacuate any oral secretions that will naturally build up. If the ventilator tubing separates from his tracheostomy tube, Samuel is unable to reconnect it to maintain his ventilation. Those close to him will be trained. But they need to sleep – so there will be “strangers” in the home at night and at other times during the day. These trained support workers to assist with this will be provided by Children’s Health Queensland (CHQ) until he turns 18 or then through the NDIS.

The basic life support implications for Sam are enormous in themselves but to maximise the quality of Sam’s life to be on par with others will require new (often expensive) and emerging technologies. Do we want for Sam to merely exist, or do we want to maximise Sam’s quality of life and for him to be able to meaningfully contribute to society as a whole? This is the challenge to build a better future for Sam – and hopefully many others as well.

Campaign for Samuel Incorporated: Building a Better Future.