Angus

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.



Other Ambassadors like Angus

Mela

Mela is diagnosed with an incredibly rare condition called Moebius syndrome

Learn More

Milla

At 26 weeks gestation our brave ambassador Milla was diagnosed with a rare heart…

Learn More

Kase

Our super cool ambassador Kase, who lives with cystic fibrosis, was generally well until nine months…

Learn More

Kemper

At the end of January 2016, Kemper was diagnosed with Friedreich's ataxia, a genetic…

Learn More

Malachai

Diagnosed at 2.5 years old with Chiari Malformation, Malachai battles daily with controlling the…

Learn More

Corin

One afternoon during feeding he went blue and was rushed to the hospital. This…

Learn More