Brave ambassador Angus was diagnosed with Neurofibromatosis Type 1 at age four.
This diagnosis came after his family originally sought help for his hyperactive behaviour – Neurofibromatosis Type 1 is a disease that impacts 1 in 3000 people and has huge extremes.
Angus’ first plexiform Neurofibromatosis (benign tumour) appeared under his ear at age five. The tumour is very vascular and sometimes appears to fluctuate in size, over the years it has spread and is now in his throat. Unfortunately, due to the position of this tumour surgery to remove it is life threatening.
Angus is awaiting debulking surgery, which will help with his appearance and hearing.
Education is an ongoing battle, but he is enjoying his first year at high school and he loves to game, he can be found most days after school attached to his Xbox playing with gamers from around the world.
Angus lives in Rotorua with his Dad, Mum has a brother Lachlan.
Professor Stephen Robertson, Cure Kids’ Chair of Paediatric Genetics at the University of Otago, and his team continue to work to characterise and better understand rare, yet significant, diseases that affect a number of New Zealand children. Click here to find out more.