ALEXANDRIA, Minn. -- A young Minnesota boy is one of only about 300 people in the world with a rare disease that leaves him paralyzed, sometimes for days.

"He is an unbelievable kid. No matter what kind of day he is having he will have a smile on his face and it just melts my heart," said Carter Wagner's mother Sara.

Carter's smile is the first thing many people notice. To his parents and brothers, it seems like it has been on his face since the day he was born.

But life has been far from easy for the 5-year-old. At 2 weeks old Carter's arms and legs began to stiffen. By 9 months old he was having seizures that would leave him paralyzed for days. One attack lasted nearly two weeks.

"We knew something was wrong with him but we just didn't quite know what it was," said Sara.

It took multiple doctors, multiple tests and the first year of Carter's life before it was found out that his paralysis and seizures were the result of a disorder called Alternating Hemiplagia of Childhood, or AHC.

His parent's call his seizures "episodes." They are triggered by flashes of light and the weather. Sometimes they affect just the left side of his body, sometimes just the right.

But there have been times when Carter's paralysis goes bilateral, affecting his entire body. When that happens he can't talk, he can't eat, he can't even move.

"We just hold him. That's really all we can do. He doesn't want to be put down, he doesn't want to be left alone. So we just hold him and comfort him the best we can and wait for it to pass," said Sara.

It is all Carter has ever known. Most people diagnosed with AHC rarely live past the age of 20.

But a doctor in Canada has come up with a trial drug that could make life easier. When a child is having an episode the drug allows them to fall asleep and when they wake up the episode is over.

The problem is the drug contains GHB, the common component in a date-rape drug. It needs to be approved by the FDA. If it is, the Wagner's still need to raise $10,000 to take part in the trial drug.

Even then it is not a cure.

"They're still going to be handicapped. They're still going to have mental degradation, they're still going to have all those issues but they get their life back for that moment," said Carter's father Todd.

For Carter, moments are precious. He often has to watch his brothers play outside because the weather can trigger an episode. It is an image that is hard on the entire family.

"It's painstaking. Every time he goes bilateral we can't help but just cry and think that there has to be something to make it stop," said Sara.

Carter's condition is worse in the winter causing paralysis about 60 to 70 percent of the time. The Wagner's said they plan to move to Texas because the weather is better for Carter's condition.

The Wagner's are holding a charity golf tournament next month to raise money for Carter's treatment:

4th Annual Dockwords Charity Classic and Silent Auction
Monday, July 13, 2009
11:00 a.m.
Alexandria Golf Club

Donations can be made to"
AHC foundation c/o Alexandria Dockworks Charity Golf Event
1301 Nokomis
Alexandria, MN 56308

For more information call Todd Wagner at 320-808-7100 or e-mail at dockworks@earthlink.net

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