Hi, my name is Alice, and I am David’s mother and usually his primary carer. David is 14, but due to a rare genetic condition, he has the cognition of a five-year-old. David is an incredible, bright, and creative child who faces significant challenges with daily living, medical care, and safety.

As his primary carer since he was born, I have spearheaded his diagnoses since he started experiencing seizures, at 18 months of age. I have advocated for his care, speaking and connecting with doctors, specialists, and professors, locally here in Tasmania, nationally (in Melbourne and Sydney), have personally emailed a professor in Edinburgh, Paris, and had regular Zoom calls with the global patient liaison officer at the Childrens Hospital of Philidelphia, with the idea he could join their Leukodystrophy program.

David has now been formally diagnosed with NASA Syndrome; a recently-named condition, which is degenerative, life-limiting, and affects an estimated 20 people globally. David requires a lot of medical intervention and surveillance, and many of his treatment options are highly experimental and come with side-effects, most of which are unknown until we try them.

Right now, we are navigating a complex legal situation to ensure David’s safety, wellbeing, and access to the care and support he deserves. This includes expert legal representation, court costs, and advocacy to make sure decisions are made in his best interests. David accesses the NDIS and he will likely be a candidate for SIL (Supported Independent Living) once he turns 18.

I have devoted my life to David, his future, health, and happiness and I'm now seeking to galvanise his future so that there is as little ambiguity as possible. Every contribution, no matter how small, will make a real difference for David.

Thank you so much for your support, for believing in David, and for helping us ensure he has the safe, secure, and loving environment he deserves.