Nicola's Story

Nicola was born with an incredibly rare, debilitating genetic condition called Costello Syndrome, a condition which affects approximately one in 28 million people worldwide. Costello Syndrome, apart from affecting almost every part of her body, is a cancer causing condition.

After nearly 4 years of battling constant and ongoing medical complications, repeat surgeries and living a life of near constant pain, in October 2011 Nicola was diagnosed with cancer, a stage 4 Embryonal Rhabdomyosarcoma.

In May of 2012, Nicola's family were told that the first 6 months of chemotherapy and 6 weeks of intense radiation therapy had failed. It appears that Nicola's cancer is likely to be untreatable.