Faith, trust and a ventilator
Meadowbrook-based author Craig Thorne was working as a deputy principal when his son, Samuel, suddenly became unable to move or breathe.
Samuel, just 9 years old at the time, was diagnosed with Transverse Myelitis, a rare neurological syndrome that damages the spinal cord – Craig’s world was completely upturned. He’s shared his experience in his self-published book, Nerves of Steel.
Nerves of a Steel is a deeply personal yet educational depiction of rare disease. The book highlights the complexities of supporting patients and their families.
“It took us to the depths where we wouldn’t think anyone would ever have to go in their life. Life-changing and life-altering doesn’t sum it up.”
— Craig Thorne
Craig spent more than 5 years formulating the book to support others. It is now a useful tool for healthcare workers.
At its core, Nerves of Steel is a celebration of Samuel and the community that supported their family.
“With help and support, you can overcome anything. You never know the depth of your resilience until it’s been tested,” Craig says.
“It took us to the depths where we wouldn’t think anyone would ever have to go in their life. Life-changing and life-altering doesn’t sum it up. It was harrowing and relentless as we dealt with something nobody understood – at times, we felt complete helplessness.”
Nerves of Steel describes the challenging realities for families living with the impacts of disease, which are often emotionally and financially draining. Through these hardships, Craig realised how incredible his community was.
“People were always coming by our house to help, without any questions asked. You feel so exposed at first, but you learn that you can trust your community,” Craig says.
“There were so many random acts of kindness – it’s just beautiful, you’ll never be able to thank them enough.”
During Samuel’s hospitalisation, neighbours jumped at the chance to support the family – organising fundraisers, ensuring their fridge was stocked with meals and even cleaning up after a burst pipe flooded their house.
Samuel, pictured with Taylor Swift, during his hospitalisation.
Now 6 years later, Samuel has completed Year 10 with flying colours and is the current Queensland champion in boccia, a popular Paralympics support.
With the help of his community, he is thriving and enjoys playing the Xbox like his friends with the latest in assistive technology.
Available at numerous retailers, purchase Nerves of Steel today. You can also make a tax-deductible donation to Campaign for Samuel Inc., via GiveNow.
By June Ho
