nicholas volker

Our History

After his parents suffered two miscarriages in a span of 15 months, Nicholas Volker was born healthy after 7 hours of natural labor completing Sean and Amylynne’s family with three older sisters. . In the first two years Nic was a happy quiet child spoiled by his sisters and family. He was frequently mistaken for a girl, his mom often told he was incredibly beautiful with long blonde hair and bright blue saucer eyes.

Shortly before his third birthday Nic developed a relentless fever and golf ball sized abscess that would throw his family on a journey of uncertainty, unimaginable stress, fear and multiple near death experiences.

The disease caused holes to form in his abdomen which leaked stool and refused to heal. Tens of treatments refused to work and Nic continued to stump the doctors going undiagnosed and misdiagnosed for years necessitating the loss of his colon at age 4 in 2009, over 100 trips to the operating room, IV only nutrition, 400 plus days in the hospital, multiple bouts of a life-threatening blood infection, immune ablation and scores of big gun antibiotics, chemo and countless off label treatments thrown at him to keep him alive. All of that before the doctors in Milwaukee took the step to sequence his genes while burning through his lifetime insurance cap of 2 million dollars.

In 2010 doctors confirmed Nic’s one in 1 billion genetic mutation of XIAP which led to a life-saving cord transplant.  On day 28 post transplant Nic developed a life-threatening brain infection.

Five years after transplant Nic is considered cured from his two ultra rare diseases and the first person saved from DNA sequencing a FACE of the Human Genome project, however he lives with many complications from the treatments given and infections acquired. He now has intractable seizures, global delays, small stature and slow growth. He also has been diagnosed recently with permanent brain damage, adhd, severe posttraumatic stress syndrome, Tourette’s and more and lives with a permanent ileostomy.

Despite all of the above Nic has a great sense of humor still loves life, playing and even pretty girls now but his biggest scars are from living most of his childhood in the hospital, missing out on normal social milestones and interactions most take for granted. Living in virtual isolation the majority of years 2 to 6 he continues to struggle with social skills, has yet to have permanent friends or playmates and is largely misunderstood by his peers,many of his teachers, the average adult stranger and even a few doctors that don’t know or can’t comprehend the battlefields Nic has fought on.

Nic continues to inspire and be his mother’s most admired teacher forcing her to go outside her comfort zone in his care and advocacy in both the medical and educational worlds while traveling across the country knocking on doors from Washington DC to Colorado to find answers, new treatments,  change laws, raise money for research and charities in order to pay it forward and provide a better quality of life originally for Nic and now others with complex life-threatening conditions and developmental delays.  The book One In A Billion the Story of Nic Volker and the Dawn of Genomic Medicine published by Simon and Schuster which  chronicles part of their medical journey and a peek into their adversity was released April 12, 2016.