Life Stories
Living life to its greatest potential despite a diagnosis of spinal muscular atrophy (SMA)
More than ever, individuals with the severe neuromuscular disease are empowered to live actively and independently. Nine-year-old Justin Dionne (bottom right) was diagnosed with SMA at age four but has been able to enjoy a full, active life that includes extracurricular sports and travelling with family.
Disability Champion’s winter round-up
Before many of us take our Christmas and New Year break, I would like to look back and give you an update on what has happened in the disability space in recent months.
Lizzie Velasquez Pleads For End To Cruel ‘FaceTime Prank’ On TikTok
She urged parents not to teach their kids to fear people who are different. Author and disability advocate Lizzie Velasquez called out the prank on her own TikTok account on Sunday. It involves telling someone they’re going to FaceTime with somebody they know, and then instead showing them a photo or video of someone intended to shock or scare them — like a mug shot, or a video of a disabled person. Velasquez came across someone using her own image, as a way to scare a child.
Happy Mondays frontman Shaun Ryder on being a rockstar with ADHD
Shaun Ryder, who is best known for being the lead singer in the bands Happy Mondays and Black Grape, was diagnosed with Attention Deficit Hyperactive Disorder (ADHD) and dyslexia in 2020.
‘What will my child become?’
My differences were thought of as less ‘cool.’ I was the target of bullying, both verbal and physical.’: Man with cerebral palsy says ‘you are more than the struggles you face’
An Anniversary in the Mountains
With the way things have gone the last couple of years, Terry and I hadn’t made any big plans for the occasion. “Let’s go to the mountains for our anniversary,” she said, out of the blue.
Care About Rare
Kam Redlawsk’s rare strory. She has an ultra rare and progressive muscle-wasting condition called GNE Myopathy (GNEM) which will eventually lead to complete immobility, if no treatment is found. She is still able to do and create so much with a well-stocked mind and what movement is left in her arms and hands.
What it feels like: A stem cell transplant for MS
A chance meeting with a man in a wheelchair led Brooke Robinson to a clinical trial that was using stem cells to treat multiple sclerosis: ‘He saved my life.’
Camilo Acero: My Family is My Trophy
Injured in his home country of Colombia at the age of 18, Camilo sustained a spinal cord injury in a car accident. The life changing event marked the start of using a wheelchair to navigate day to day life, but even in the early moments of trauma, his optimism was remarkable.
Sacrifice and Strength: A Mother and Daughter’s Journey Through SCI
Rebuilding a life following a high-level spinal cord injury is never easy. For Cassandra Brandt, a single mother, and her daughter Haley, America’s worsening caregiver crisis forced them into a situation that no family should have to face.