JACKSONVILLE, Fla. -- Watching a parent suffer, then die from a debilitating disease is horrible.
But knowing there is a 50 percent chance of yourself - and your child - suffering the same fate is the reality for families with Huntington's disease.
"Daniel was born Dec. 4, 1976. I wanted a bicentennial baby and I got one," said Paula Mundy.
Her son Daniel Mundy had Huntington's, a hereditary brain disorder that causes certain nerve cells in the brain to waste away. Now, his love for his daughter has prompted him to raise awareness of the disease despite its effects in him, and undergo a revolutionary deep brain surgery to treat him symptoms.
At birth, Mundy, 34, was a healthy baby boy and grew up normal. "He was on the Stanton baseball team and got a scholarship to UNF," said his mom.
But through the years, his family worried.
They knew he has a 50 percent chance of getting Huntington's. His father was diagnosed at 27 and died at 36.
When Daniel's wife was pregnant, he got tested and the results confirmed what they had feared. "He wasn't able to finish college," said Paula Mundy.
Now at 34, his symptoms are severe and continue to worsen. The sudden, quick and sometimes wild jerking movements called chorea make it impossible for him to feed himself, sit still or get around on his own.
"He's brave enough to make videos and talk to people about Huntington's disease. They can actually see what happens to a man with Huntington's disease in the prime of his life," said his brother Jason Mundy.
While many with this disease go into hiding, Daniel Mundy does the opposite. With his brother's help, the two have documented the progression of the disease, making a video for YouTube.
"Daniel is one of my heroes. He really is. He puts himself out there in front of people in a way other people wouldn't," said friend Tina Hellum whose father also had Huntington's.
Mundy is putting himself out there for several reasons including building awareness and compassion, but mostly he's doing it for his daughter, Kayla because he knows she has a 50/50 chance of getting the same gene. "She's my whole world," he said.
The surgery he underwent is usually reserved for patients with Parkinson's called deep brain stimulation.
"With this surgery what we're trying to do is decrease their normal extra movements ... so the patient, Danny in this case, will have better control of his body," said Dr. Ramon Rodriguez, a clinical assistant professor of neurology at Shands Gainesville.
During the five-hour procedure at Shands Gainesville a few months ago, he proved his strength and courage. "I'm a tough guy," Mundy had said in the operating room.
"He's inspirational. Something I've learned from Daniel is that he just continues to move forward with this drive and the love he has for his daughter," said Rodriguez.
Working through an opening in the skull the size of a nickel, doctors placed electrodes deep into the brain; a device similar to a pacemaker was implanted under the collarbone to provide an electrical impulse to the part of the brain involved in motor function.
The surgery went well, his family said, but it will be months before they know if it worked - it isn't a cure. "We're optimistic and he is too this will give him a better quality of life. It's not a cure or anything; it's simply treating the symptoms," said his mother.
Mundy's doing this, he said, for a cure, to build compassion and for hope.
"In a world where people like to judge, Daniel's out there...," said Hellum. "He's out there putting his face out there and he's really out there for what we're trying to do: finding that cure for my daughter, for his daughter and for many others,"
Three months after the surgery his mother said they are already seeing an improvement. The jerky movements are almost gone and he's now able to use a walker, she said.
Mundy and his family have started a Huntington's support group in Jacksonville and they have a walk coming up on April 9 at The Landing to help raise money to find a cure for the disease.
MORE: To donate to HDSA's North Florida Affiliate
MORE: Details on the event
MORE: Huntington's disease
First Coast News