Our VOGM Stories

A mother’s story

In honor of rare disease month we are sharing sweet Evangeline Story that her mother Heather shared on our private group welcome to all VOGM parents for support and guidance ♡

December 31, 2024|Our Stories

For Auld Lang Syne

As the year draws to a close, many of us are relaxing with our families in the pre- or post- glow of a major holiday. Many of these holidays celebrate and give thanks for the things that sustain us--our lights in the dar...

December 21, 2024|Our Stories

Theo is Changing Spaces

While we work hard to make the lives of VOGM families easier, we are not the only people doing so in this community. The VOGM journey required many of us to learn to advocate for ourselves and to overcome adversity. Cour...

November 24, 2024|Our Stories

Ciao, Bella! A VOGM survivor story

Emori Fife is one of many parents who was blindsided by this diagnosis and, then, was pushed into a storm of appointments, medical terminology, and surgeries. However, Emori and Bella pushed through. Her 6 month birthday...

November 9, 2024|Our Stories

Cristina Munda: 4 years later

On December 30, 2020, we shared our blog post For Unto Us, A Child Is Born celebrating the fact that Cristina not only survived VOGM, but she was having her first child. It was a hope that most of us thought was too big ...

October 31, 2024|Our Stories

To infinity and Beyond

today we share a little bit about one very special VOGM Warrior. Louis has been an inspiration and a hope to so many VOGM families as he not only is alive and well, he graduated from OXFORD University! His story is trul...

February 29, 2024|Our Stories

Denver’s Story

On rare disease day, we’d like to share Denver’s story from the beginning until now! Denver and her family have gotten to tell her story all over the world through CNN articles, a visit to the Today Show, and other press...

January 20, 2024

Dion's Journey

Step into the journey of Dion Allen Brako, a handsome VOGM warrior who received his first embolization in October 2023 at the Chennaï Hospital in India. The surgery was performed by the skillful Dr. Srinivasan Paramasiv...

October 25, 2023|Our Stories

A second chance.

One of the things that makes the VOGM community so strong is that we face similar obstacles no matter where we are in the world: a rare life-threatening condition, access to qualified treatment providers, and the likelih...

May 31, 2023|Our Stories

Callie’s Story

Callie Grace's journey began on September 7th, when her parents, Clarisa and Jordan, received the heartbreaking diagnosis of Vein of Galen Malformation (VOGM) during a routine ultrasound at 30 weeks. Confusion and uncert...

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