What is Menkes? North Texas Baby Battling Rare Disease

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ARLINGTON -- Here at NewsFix, we get to tell stories about overcoming odds, and sometimes those stories hit close to home. One of our photographer's nephew is in a fight for his life.

Meet one-year-old Preston. His folks, Sean and Young Wheeler, had no doubt that they wanted to be parents.

“We really started picking up that conversation of having kids, pretty close to when we got married,” said first-time dad, Sean Wheeler.

But like many couples, they encountered some difficulties.

“We were doing fertility treatment for about a year. During that time we, unfortunately, had a miscarriage,” Wheeler said.

Despite that devastating setback a year ago, they welcomed baby boy Preston.

“We were extremely excited. You know you have all these thoughts and predictions on what your son's going to be when he grows up -- play baseball with him, play soccer," said Sean.

But that excitement soon turned to fear when Preston started having seizures. He was diagnosed with a rare genetic disease called Menkes.

“What the hell is Menkes?!" Wheeler asked when he first heard the diagnosis. “We went straight to Google and looked it up and nothing looked good.”

“Children who have this disease have a problem absorbing copper across the intestinal lining, which causes a cascade of problems in the body,” said Dr. Chris Dreiling with Pediatric  Associates of Dallas.

Sadly for Preston, his disease doesn't have a cure. Only one in 100,000 people has the disease. What's more, the National Institute of Neurological Disorders reports babies born with Menkes usually die within the first decade of their life.

“You would ask, ‘Can't we just give the kids more copper?’ But the basic problem is the body won't absorb it,” explained Dr. Dreiling.

“It was one of the hardest days, since the miscarriage,” Wheeler said.

Tireless in their efforts to help their son, the Wheelers aren't giving up hope. Preston is now part of a national study at NIH in Maryland. He's being treated with copper injections, which help ease his symptoms.

Even still, Preston has been in the hospital nearly a dozen times. Family and friends have set up a GoFundMe page  to help with medical expenses.

Meanwhile, The Wheelers want to put a face on Menkes and warn new parents not to ignore certain symptoms --  coarse, twisted hair, respiratory problems, and of course seizures.

Preston’s parents are praying their son will beat the odds and grow to experience everything a little boy should.

“I believe that Preston's a fighter," Wheeler said. "And that he's eventually going to get through this. It's still my dream to play baseball with Preston.”