Journalist, ABC TV Presenter
ABC legend Emma Alberici has been passionate about what we do at Camp Quality for over 20 years, since she became the Companion of two very special brothers. In 1998, Jake Lawler was diagnosed with an extremely rare and fatal condition – Metachromatic Leukodystrophy (MLD). Just months later, the family learnt that their younger boy, Tom, was also affected by 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 say to wheelchair-bound child unable to express himself other than by groaning. The fast, degenerative nature of the diagnosis meant that Tom was 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 obsession for 21 years. 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 along the way have played an enormous role in all of the Lawler's lives. In response, Emma and the family regularly share their story at fundraisers and events, and are thrilled to champion 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."