• Tweet
• Share
• Email
• Print

MILWAUKEE - TODAY'S TMJ4 is teaming up with the Milwaukee Journal Sentinel to bring you a story of hope, enhanced by the power of science. It's a desperate bid to save a little boy's life, involving an idea years ahead of its time.

This is also a story of the miracle of modern medicine, and how doctors still have so much to learn. Dr. Alan Mayer, a Gastroenterologist at Children's Hospital of Wisconsin says "I think it's now dawning on us we did something that's important."

Six year old Nic Volker is a walking miracle. A little boy who has always just wanted a 'normal' life. "I hope and pray his future is going to be dynamic, and the prognosis is good," his mom says.

Just before his second birthday, Nic started having intestinal problems. His young life has never been the same since.

Nic's mom Amylynne says he developed a disorder resembling Crohn's Disease, and it became dangerous for him to eat. "As he got older and he wanted to eat he wasn't able to eat. The doctors wouldn't let him eat."

But the doctors didn't have any real answers when it came to what was wrong with Nic. "Normally with medicine we can get these problems under control, but with Nic we never really did," Dr. Mayer told us. "And the disease continued to progress."

The Volker family is from Madison, but Amylynne and Nic have basically lived at Children's Hospital in Milwaukee for the past four years seeing specialists like Dr. Mayer on a daily basis. Nic's condition was very grave at times. "He's the comeback kid," Amylynne says. "He's come back, and come out, of anesthesia over 150 times in the operating room." But Dr. Mayer knew Nic could only fight for so long.

Dr. Mayer tells us "I'm pretty sure that Nic would have died, and that's what everybody felt." That's when he decided to take a risk, and follow his instincts about Nic's condition. "It was so severe, my intuition told me this had to be due to a genetic mutation." Dr. Mayer went Dr. Howard Jacob, a renowned genetic researcher at the Medical College of Wisconsin. They decided to try something that's never done before.

Dr. Howard explains the procedure. "Ultimately we decided on sequencing all his genes, and focusing on whether or not those genes could tell us info about the boy's mutation, or could we find the mutation and therefore understand the disease."

The challenge? It's like finding a needle in a haystack. Dr. Jacob says "the analogy is we're looking across billions of elements, and we're looking for what ultimately came down to be one single change." Amazingly, doctors found the gene in less than four months!

Amylynne couldn't believe it. "When they told me thay found the mutation I was extremely excited they found something, and my prayers had been answered." Doctors used that knowledge to diagnose Nic with a rare disease and ultimately decided on a bone marrow transplant as treatment. "So what we really did was we replaced his immune system that was defective with a different immune system that lacked that defect," Dr. Mayer explains.

The transplant was a success. Nic no longer has to eat *pretend* food. He can chow down on pickles and chips, but his favorite food is steak. "...it has to be accompanied by A1 sauce at all times," his mom tells us.

It's a compelling story of science and hope, one of the reasons Milwaukee Journal Sentinel reporters Gallgher and Mark Johnson first picked up the story and followed the family's progress for a year. "We had a really good story, really good docs involved in Nic's care," Gallagher commented, "and a really great family that opened their lives to us." Johnson added, "probably one of the hardest things we had to deal with was balancing the science with the emotional story of this family."

Science doctors hope will eventually bring DNA sequencing to the forefront. Dr. Jacob says "many people have discussed the concept of personalized medicine, and using this type of tech for that, and to be one of the first, if not the first to do that, is really a unique opportunity."

And for the Volker family it's an opportunity to finally have a happy holiday. "There's just so many feelings, but I feel really good right now," Amylynne tells us.

Nic's father and three teenage sisters are at home in Madison. With this breakthrough, the family hopes to be back together again soon.

This Madison family has been searching for a long time for an answer to their son's mysterious illness. Now they've finally found it, and a medical breakthrough is born right here in Milwaukee. This is a story of a little boy's will to survive, and a family's struggle to never give up.

"There were just so many times in Nic's life they just didn't think Nic would make it another month or another year," his mother Amylynne Santiago-Volker tells us.