Emma Alberici has been passionate about the work of Camp Quality for 20 years, since she became the companion of two very special brothers. In 1998, Jake Lawler was diagnosed with the extremely rare and fatal condition – metachromatic leukodystrophy (MLD. Just months later, the family learnt that their younger boy, Tom had also been struck by this debilitating genetic disease.
When Emma first took 6-year old Jake on camp, she felt the weight of responsibility. He was still walking but needed much assistance.
Over the next three years, she watched as Jake went from a vibrant young boy with much to say to wheelchair bound and unable to express himself other than in groans. The fast, degenerative nature of the diagnosis meant that Tom was also going to lose his function quickly. A world first cord blood transplant for MLD helped stave off the worst of the effects for Tom Lawler who is, today, a happy yet seriously compromised 21 year old. His disabilities and stunted growth were the tragic side effects of the still largely untested MLD treatments. Keeping both boys alive has been the Lawler family’s obsession for 21 years.
Tom, 21 and Jake, 26 have defied the odds and are the oldest known survivors of juvenile MLD. Camp Quality, along with the many other helpers along the way, have played an enormous role in their lives. Emma and the Lawlers share their story at Camp Quality fundraisers and are thrilled to champion the 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, 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."