When Alessia was born, she looked perfect — tiny fingers, a strong heartbeat, and a future full of hope. 

Her parents, Adriana and Adam, had no idea that just two weeks later, a phone call would change everything. Alessia had become the first baby in NSW to be diagnosed with Spinal Muscular Atrophy (SMA) through newborn screening, a rare and fatal genetic disease that, without treatment, usually claims a child’s life before their second birthday. 

“We were devastated,” said Mum Adriana. “Alessia hadn’t shown any symptoms yet, but we were told we had to act fast.” 

But there was a glimmer of hope. 

NSW had just joined an international clinical trial for a revolutionary new gene therapy. With just one infusion, scientists believed they could correct the genetic fault, offering Alessia not just more time, but a real chance at life. 

Alessia slept through the treatment. 

And then… she began to thrive. 

Her parents watched with cautious optimism as she smiled, sat up, took her first steps. And today, Alessia is a joyful seven-year-old, full of personality, laughter, and energy. The only sign of her early diagnosis is a slight weakness in her legs. 

Alessia's story is more than a medical miracle, it’s proof that research saves lives. Her life was changed because of science. Because of people like you. 

Donate now to support the research that gives kids like Alessia a future.