It had Karla thinking clearly. She wanted to make a difference. "I decided to give back because we had so much given to us," says Karla, referring to the people who lent a hand to the Dummers.

Karla started a foundation called Sophia's Saving Grace, that is helping families in a familiar situation. "Our goal isn't to be the biggest foundation. And our goal isn't to raise the most money. My goal would be to give back, and to make a family's day who is going through a rough time easier," Karla says.

Simple things, like taking goody bags to families stuck in the NICU on Mother's Day, rather than receiving Mother's Day gifts from her kids. "She told them all she wanted to do was these bags. And take them to the NICU," says Jason.

"I just think Mother's day would be one of those extra hard holidays to be there," Karla says, choking back tears.

Anything to give these families hope that their child can beat the odds, just like Sophia.

"My biggest wish for Sophia is that she just rises above her condition. I want her to be defined as my other kids are, as Sophia Dummer, the girl who loves to ride her bike. Or the girl that loves to draw," says Karla.

And that one day they'll be able to enjoy a nice day outside with their loved ones, just like the Dummers do every chance they get.

Another project that the Dummers are working on through Sophia's Saving Grace, is to provide families with kids who have G-Tubes or central lines placed, with a Tubie Friend Bag. It's a stuffed animal that features the same tubes that the child does on their body. Karla says it can help kids explain their condition to other kids.

Not only is Karla raising awareness for GI disorders through the foundation, she talked in front of Congress, pushing for more GI research. There is currently a motility and GI disorders bill, called HR829, that would move funds to expand GI research.

Sophia is heading to Cincinnati in six weeks for a doctor's appointment. They will be doing tests to see if she has a rare GI disorder, Pseudo-Obstruction Disorder, which is a mechanical obstruction in the intestines. Another surgery could be in Sophia's future, if doctors find that she does suffer from the disorder.

If you would like to learn more about Sophia's story, or want to help the Sophia's Saving Grace foundation, you can visit the foundation's website, or find them on Facebook. You can just search for "Sophia's Saving Grace."