Brandon (Canada)

Brandon was diagnosed with Complex 1 Deficiency when he was a toddler, and has managed to defy most of his doctors’ expectations for the last 17 years.

Brandon uses a wheelchair, (very well – we rarely can keep up with him!) and lives with many supports to get the most out of his life.

Brandon faced countless hospital stays, surgeries, illnesses, treatments and testing. We’re extremely lucky that his heart remains quite strong, as do most of his other systems. Brandon cannot speak but communicates well with sign language and communication tablets. His vision is good but he is losing color vision over time. His hearing is excellent. We often say the things he’s lost are all things one can live without, and focus on that when we feel discouraged.

When he gets sick, Brandon’s lungs are the biggest concern as he isn’t strong enough to cough well. He tends to need aggressive support in hospital when he has any sort of illness – lung physio, cough assist treatments, etc.

He remains stubbornly optimistic and finds a way to have a good time whether he’s in his home hospital bed, admitted to hospital, travelling for care, or just chilling out at home.

In 2015 we learned that he had 2 ECHS1 mutations.

Today Brandon continues his battle – and a battle it is. He relies on a feeding tube as he often cannot eat or drink enough by mouth. He requires a wheelchair, hospital bed, breathing supports (cough assist machine, nebulizer, percussor), and currently he’s preparing for the scariest and hardest step – with his spine curving dangerously, Brandon requires spinal fusion surgery to place rods along his spine to stabilize it.

At 17, Brandon is learning to code computer programs, training on a brain control interface system that uses his brainwaves to control computers and his surroundings, he loves gaming, his VR world, building little robots and gadgets, and learning about investing.

He’s a smart, gleeful, sociable kid that loves the beach, the farms nearby, hatching chicks for local farms, and learning about computers.

‘Half the energy, twice the spunk’ has been his motto from the start and thanks to the hope gene therapy offers, we finally have a solid reason to look forward with more hope and less fear.