Holmen girl's fight with intestinal disorder inspires family to give back

Published On: May 13 2013 09:20:52 AM CDT
HOLMEN, Wis. -

It's a bright, sunny day in Holmen, Wisconsin... which means there's a good chance you'll find the Dummer family, all seven of them, outside soaking up the rays.

"The kids and I are absolutely in love with being outside now that it's finally getting nice out," says Jason Dummer, a lifelong Holmen resident.

They cherish the time they have together, because things haven't always been this way.

A couple of years back the Dummer clan was a family of four.

Mom Karla, Dad Jason, their six-year-old daughter Loralee, and four-year-old son Francis. Mom and Dad felt there was room for one last kid.

"We wanted one more child. My husband's from a big family. He has four brothers, and he wanted a big family," says Karla Dummer, who married Jason in 2005.

The pair were in for quite a surprise as Dad got his wish. They were having one child, plus two more, natural triplets.

"I was more than excited I guess to say," says Jason.

"I was very shocked. It took me a long time to come to terms," remembers Karla.

She eventually came around, and the triplets made it to 34 weeks, which is considered full term for multiples. But the babies still arrived earlier than expected, just after Mother's Day 2011, because there was a complication.

"We found out there was a problem with Sophia, so they did an emergency C-Section," says Karla.

Doctors thought there was a blockage in her intestines, and they knew they had to act quickly. "About 24 hours after she was born she had her first surgery," remembers Karla.

The surgery to remove the blockage didn't work, and Sophia underwent four more surgeries in just two months in La Crosse, all of which were not successful. "At that point we knew she would need intensive GI care, so we decided to transfer her to Milwaukee's Children's Hospital, where they have an excellent GI staff," recalls Karla.

So the Dummer family was forced to split up, Karla in Milwaukee with Sophia, her sister Izabelle, and brother Kooper, and Jason more than 200 miles away in Holmen, with Loralee and Francis. "The kids still went to school, still had their normal lives. And they've been so strong through it all," says Karla.

"On Friday after school we'd go to Milwaukee and we'd stay at the Ronald McDonald House most of the time," recalls Jason.

There was finally a breakthrough at the Children's Hospital, a successful surgery.

Sophia spent the first six-months of her life in neo-natal intensive care.

"The nurses at the NICU work like I've never seen anyone else work. They love those kids like they're their own," says Karla, who formed close bonds with many of the NICU nurses.

Thanks in part to the NICU staff, and Sophia's strong will, she finally got to make the trip home.

Fast forward to today. Sophia has had 14 surgeries since her birth, seven of those were major. She is left with short gut syndrome, meaning her intestines are too short to process food normally.

So breakfast, lunch and dinner gets to her stomach through tubes and I-V's. "She has a backpack that she wears most of the time with a small tube going to her G-Tube. She gets fed 24 hours per day. If you wouldn't see that tube, you wouldn't know anything is wrong," Karla says.

In many ways Sophia is just a normal kid getting ready to celebrate her second birthday. "She loves to play just like the others. She'll swing just like the other two. She loves to get tickled like the other two," says Karla, referring to Izabelle and Kooper.

All that time spent getting Sophia to this point. Hours upon hours sitting in the NICU.

"You sit in that room and listen to machines keep your kid alive and healthy. And you almost go crazy," remembers Jason.

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."