In April of 2006, our son Fynn was born with Vein of Galen Malformation. From that moment we began our search for any relevant and current information about this rare condition. We also searched for a support group or aother family in New Zealand who were going through a similar situation to ourselves.

We found little current information about the condition and were unable to find a support group or another family with the condition in New Zealand.

In April of 2007, 364 days after Fynn was born, Julie Kingi’s son Levi was born with Vein of Galen Malformation. Through the medical professionals who were working with both of our families we were put into contact with each other.

A bond instantly formed between our two families. Both Julie and I were so happy to be able to share our experiences with someone who knew first hand what the other was going through. The idea of a support group was formed and regular coffee mornings and play dates were established between our two families, the first Vein of Galen Support Group get togethers as such.

In September of 2007 I received an e-mail from the Watson family in Australia. Their baby Mason had been born with the malformation. Julie and I were able to give support and information to this family across the ditch in Australia via e-mail and our small group of two became three. We were growing.

Around this time I decided that we should formalise our group that was slowly forming so that other families could easily make contact and benefit from the information and support that we now had.

I approached John Forman of NZORD to see if our group could be included in the NZORD directory of New Zealand Rare Disorder Support Groups. I put together some information about Vein of Galen for our directory listing and a few days later we were being offered a fully funded web site, complete with webdesigner by NZORD to share information and communicate with. Now we were really established!

Our website was published on the internet January 2008.

Bridgette Wright
Simon Coyle
(Co-ordinators)

Simon Coyle and Bridgette Wright