Charity Event for Local Baby With Rare Disorder

But as Shane turned two months old, mom had a feeling. "We just knew something wasn't right."

Melissa says at first she noticed Shane was not eating. But then there were other problems. "He wasn't cooing. He wasn't smiling."

Doctors later diagnosed him with a rare genetic disorder. "We found he had 1p36 chromosome deletion and duplication." What it means is one of Shane's genes mutated and then duplicated.

"In the world, he is one of four. At this time, we just really don't know what his future is gonna hold," says Melissa.

Baby Shane cannot see. He cannot swallow. He can't really move. "He doesn't have the muscle tone to move his arms or his legs or lift his head."

Mom and dad have weighed the odds on whether to even treat Baby Shane or just make him as comfortable as possible. They've decided to fight.

Baby Shane, now in the ICU at Wolfson Children's Hospital, survived one surgery this week to help him breathe a little better.

"God put him here for a purpose and we need to try our hardest to get him through this," says Melissa.

Mom and dad say it's been a long, hard road. "It's been very hard. We have tried hard to stay with our faith. We just leave it in His hands."

Shane, who arrived at seven pounds even, is now up to a hefty twelve pounds. He's made his five and a half month mark. He's holding on, and so are mom and dad.

"If it means he only makes it to three years, then we only have him three years." Family and friends are trying to help make it easy on the family and Shane.

They have organized a charity auction and dinner for October 24, 2009, at the Mark Lance Armory on San Marco Avenue in St. Augustine.

Tickets are $25. Weekend getaways, golf and even a horse are up for auction at the event.