About Us

Our daughter, Katie, was born with Vein Of Galen Malformation, affecting only 1 in 3 million per year. She wasn’t diagnosed until she was a year old. By then she was very ill. We found few surgeons who even knew about her condition, much less how to treat it. A doctor in St. Louis wanted to wait till she was older, a doctor in Kansas City wanted to rush a dangerous shunting procedure. Meanwhile, Katie’s facial veins were mapping across her face and deepening in color, she had acquired dark circles under her eyes, she was having headaches and even endured a partial paralysis. In the early stages of the diagnosis our neurosurgeon, Dr. Shah, and his Physician Assistant, Kathryn Welch, told us about a surgeon in New York who was touted as a miracle worker but on our moderate Kansas incomes, we didn’t think we could afford the trip. 

One desperate evening I posted my concerns on the only known VOGM website in existence and begged for someone to steer me in the right direction.  A man from Georgia saw my frantic rant on the parent forum and emailed me within hours. He explained his son was born with the same malformation so he understood our fear. Over the next 48 hours he and his wife calmed me, counseled me and urged me to contact Dr. Berenstein (the miracle worker) in New York. We did. He received her CT scans and MRI films the next week and called immediately. He explained our daughter was failing and must be treated immediately. 

Two weeks before Christmas in December 2006, Katie underwent her first  embolization procedure where surgical glue was carefully placed to close off the arteries in her brain, leading to the vein. Over the next 3 years she would have 3 more procedures. On May 2008 a final angioplasty was performed to check the size of the vein. Although we were prepared for another procedure, Dr. Berenstein called our waiting room to say, “you are done with me, Kaitlynn is cured.” Since 2008 she has continued to thrive without any long-lasting physical or mental effects from the malformation or procedures to correct it. Aside from a few facial veins that are still prominent, you would never know what this sweet child has been through. She will always have G-force restrictions but otherwise, is expected to live a normal life.

We never met the couple from Georgia who helped guide us that weekend. During the course of our conversations we learned their son, Liam, passed away shortly after his first embolization procedure at only 7 months. Liam’s father was still drawn to the VOGM website on occasion and just happened to see my plea. There is no doubt in our minds, our path was changed and Katie’s life was saved by these two kind, selfless parents who sensed our fragile situation and simply wanted to help.

My husband, Doug, and I have always said, if they can pay it forward after such a devastating loss, we MUST.