Sophie Newbold

Sophie, 16, lives with Cardiofaciocutaneous (CFC) Syndrome, a rare genetic condition that typically affects the heart, facial features and skin. Sophie is also quite small for her age so she is often mistaken to be a lot younger. She was just the twelfth person in the world to be diagnosed with this condition at birth.

In 2006 Cure Kids arranged for Sophie to have hair extensions - due to her condition her hair did not grow. Sophie loved having long locks similar to her sisters, Charlotte and Francis.

In 2010 Professor Swee Tan removed several large hematomas that were on Sophie’s body. Until Professor Tan stepped in no one in New Zealand was able to help Sophie with these growths, which were painful and as Sophie says “did not look nice”. 

Sophie is now very excited about wearing a bikini and being just like  other 16 year old girls.  Sophie says of Professor Tan “he is the coolest person in the world, the best, I love him”.

Sophie’s mother, Bridget Newbold, finds it hard to put into words the difference that Professor Tan has made in their daughter’s life: “Professor Swee Tan, to our family, is a surgeon extraordaire and most importantly– a “Wish Maker” to Sophie. He is an  amazing man who is so dedicated in his work and now has the whole world looking at his achievements, and quite rightly so. We as a family cannot thank him enough. With Swee and Cure Kids we learnt that there's no such thing as “I can’t.”

Sophie faces a number of challenges in her life, but she lets nothing hold her back. She loves swimming, skiing and her home schooling.  She has a beautiful smile and a caring nature, and she endears herself to everyone who meets her.

Sophie’s future is uncertain due to the rarity of her condition.  She has five wishes in life; to get a driver’s license, to compete in a ski race, to compete in a swim race, to get a part time job, and lastly to be a model. Cure Kids is working hard to make those dreams come true.

Sometimes providing hope is about breaking down barriers for children who live with life-threatening illnesses.