Emma AlbericiMedia Personality
Emma Alberici has been passionate about our work at Camp Quality for over 20 years – ever since she became the camp companion of two very special brothers.
In 1998, Jake Lawler was diagnosed with an extremely rare and fatal condition – metachromatic leukodystrophy (MLD). Sadly, just months later, the family learnt that their younger boy, Tom, was also facing this debilitating genetic disease.
When Emma first took six-year-old Jake on camp, she felt the weight of responsibility that comes with being a companion. Jake was still walking at that stage, but he needed a lot of assistance.
Over the next three years, Emma watched as Jake went from a vibrant young boy with plenty to say, to a wheelchair-bound child unable to express himself other than by groaning. The fast, degenerative nature of the diagnosis meant that Tom was also going to lose neural function in a similarly quick manner. A world-first umbilical cord blood transplant for MLD helped stave off the worst of the effects for Tom, who is, today, a happy yet seriously compromised 21-year-old.
Tom’s disabilities and stunted growth are the tragic side-effects of the still largely untested MLD treatments, but keeping both boys alive has been the Lawler family’s mission for two decades. As a result, Tom and Jake have defied the odds and are the oldest known survivors of juvenile MLD.
Camp Quality, Emma and countless other carers, volunteers and medical professionals have played an enormous role in the Lawler family’s lives. In response, Emma and the family regularly share their story at fundraisers and events, being thrilled to champion the Camp Quality cause.
“Being a Camp Quality volunteer has changed my perspective on life. It’s not just about taking kids away on a great camp – it’s about showing kids a fabulous time and introducing them to other kids going through similar tough times. But I think, most importantly, it’s about giving their parents an incredibly important break from the trauma and mental exhaustion.”
Emma worked with the ABC for 18 years, has been a Play School presenter, media personality and Chief Strategy, Government Relations and Communications Officer at Compare the Market Australia.