A rare disease has kept them in hospitals and kept their son fighting for his life.
Now, they're home, they're just hoping this trip is one that will last.
Keegan Gallup is only 18 months old.
But he already has a full time job.
Trying to stay alive.
Keegan as an extra chromosome 22.
A rare disease called "Cat Eye Syndrome"
It can bring on a variety of complications, one which actually makes some eyes look like a cat's, another brings mental and physical delays.
But for Keegan, it's about his heart
His right pulmonary vein is practically shut down.
The day after he was born, it was straight to I.C.U.
"It's tough because we're told it would be a five to six hour surgery and it ended up being between 15 to 16 hours. He had to go on by-pass three times during that surgery," explains Keegan's mom, Krista Carmody. "That was the scariest part, seeing your child lifeless, not knowing what's going to happen."
That's when Carmody says they wouldn't take no for an answer.
Keegan's had three heart surgeries since.
He lives hooked up to machines that feed him and give him air.
Nurses are always on call.
It's completely changing his parent's lives.
"I can't work anymore, I used to work full time," says Carmody. "But I wouldn't trade it for the world."
They say medical bills are well into the millions.
"Just one hospital bill from Chicago was $1 million for six weeks."
Doctor's can't give an answer as to what Keegan's up against.
In his 18 short months of life, only a little more than five of them have been spent at home.
That leaves little time for things like learning to walk, or crawl.
But Keegan has mastered one thing that may give him as much as he needs to outweigh his odds...
He's learned to smile.
"He has a huge smile that lights up everyone," says Carmody. "He's amazing."
Keegan's family wants to raise awareness about his heart condition and hundreds of other kids like him who are suffering.
They're holding a benefit this weekend to help.
WHEN: September 22
TIME: 4-9 pm
WHERE: Michael in the Monte Cristo Room
ADDRESS: 605 Upper 10 Creek Rd. Germantown Hills, IL
Raffle Prizes and Silent Auction