We invite you to read the stories our members have written about their journeys so far on the vein of Galen path.

All of the journeys have low and high points and each is unique and different. There is a common thread that unites all of these stories; each has a precious vein of Galen child at the heart of it.

The writers of these stories hope that their stories give you hope, guidance and support as you travel along on your journey.

If you have a story that you would like to include please contact us at vgm.info@nzord.org.nz and we would be more than happy to include it here.

Fynn

Fynn was born on the 24 of April 2006. He lives in New Zealand with his parents Bridgette and Simon. Fynn is and has been treated at National Woman’s NICU, Auckland Hospital and Starship Hospital in Auckland. This is his story from birth through five embolisations and up to the age of two. He is doing well.

Fynn also has a care page set up at Caringbridge so friends and family can follow his progress.

Mason

Mason was born on the 12 of June 2007. He lives in Australia with his parents Amee and Russell. Mason’s treatment has and is taking place at John Hunter Hospital in Newcastle and at the Westmead Children’s Hospital in Sydney. This is his story from birth till the age of 7 months. He also is doing very well.

Danny

Danny was born on the 8 of October 2008 in Toledo, Ohio. At Danny’s six month check up it was discovered that his head circumference was off the charts but doctors reassured his parents that this was “just normal growth”. Danny’s Mom, a nurse, and his Dad decided to do some research of their own into their son’s accelerated head growth. They discovered that he had many of the symptoms that are characteristic of hydrocephalus and asked for Danny to have a CT scan to further investigate. This is Danny’s story of his diagnosis and treatment up till the age of two and a half years.

Jessica

Jessica was born on the 29 of May 2000. She was born at Wellington Hospital but had to be transferred to Melbourne Hospital for treatment as there was no one who could treat her in New Zealand at that time. Jessica has had three embolisations in Melbourne and her Mum tells us that she is the oldest surviving vein of Galen child in New Zealand. Jessica is now eight years old and enjoys playing sport, going to school and singing in her school choir. This is her amazing story.

Other Stories from Around the World

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All the Thanks in the World Is Not Enough

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Super Glue Surgery Saved Ingleby Barwick Boy

Toddler Saved After Pioneering Op Uses Medical Superglue to Plug Holes in Her Brain

New York surgeon gives Texas girl with a rare disorder a new lease on life