History

Cassi's Story

I was born on August 17 1979 at 3am, the birthmarks were visiable from the time I was born, I also have an AV Malformation.

When I was an hour old I was rushed from North Shore Hospital to National Womens as National Womens had the equipment required to look after me.

As I got older the VBs involuted with the help of Steroids, although you still see the remenents of them behind my ears and the AV malformation still exists.

In 2000 I was diagnosed with PHACES Syndrome and I have started a support Group for people who have this.
As far as I know I am the only one in New Zealand with this syndrome.

Clemency's Story

Hi, I'm Gabrielle and the mother of a beautiful 5 year old daughter, Clemency. Clemency has a hemangioma on her chin and we are now awaiting surgery to have it removed. Clemency's hemangioma first appeared as a small cluster of broken blood vessels on her chin, which, as her birth was fairly truamatic, was first diagnosed as a 'stork mark'. It was diagnosed as a hemangioma when she was 8 weeks old. The hemangioma grew progressively till she was about 18 months old and has been slowly involuting ever since. We have always followed our various doctors' advice to wait as long as possible before surgery in order to acheive the best possible cosmetic result once surgery was attempted. We have now had three doctors agree that Clemency's hemangioma will probably not involute further to any major degree and she has reached the stage where she has enough skin to enable the best cosmetic result - we are now waiting for a date for surgery. I feel that every decision made for our children when made intelligently, rationally, and with well researched backup is a valid one - whatever that decision may be. Like many areas in my life I am an advocate for choice and as we all know every birthmark is different and requires different treatment. We are happy that we have done the best thing for our daughter and we are also happy and delighted that there are so many options out there for parents to take now - wonderful life saving treatments and surgical techniques that change lives and of course doctors with the courage and knowledge to help. Choices and the freedom to make them are one of the most important things we have in our lives.

My family and I have approached this journey with as positive an attitude as possible. We have tried our hardest to look upon people's stares and comments as ways to educate and enlighten people.

Clemency is a bright, confident, beautiful little girl and has been so brave
and couragous throughout the years. She loves princesses, mermaids,
chocolate and making "fairy rings". Clemency is at school and I have 3 year old son, Theo, who attends our local Playcentre of which I am Co-President.

Life is busy, fun and a challenge and we are making the most of it !