Scheff Boys Syndrome

Every year the Children's Miracle Network selects a young child to be its 'CMN Champion' to appear in commercials, posters and billboards.  

But this year, it selected two.  

You can definitely see that these two caped crusaders are brothers. But even though they are five years apart, in some ways Jaxon and Jeren Scheff ....are identical twins.

"Jeren and Jaxon's journey first began when Jaxon was first born," Jen said. 

That's because Jaxson and Jeren both have a rare genetic disorder that affects both their eyesight and breathing. In fact, it's so rare, doctors don't even have a name for it yet. The family calls it the 'Scheff Boys Syndrome.' 

Because of the genetic disorder, the bone structures in their faces were closing their airways meaning they were both struggling to breath when they were first born, especially Jeren. 

"Many times, the doctors would come in and say, he's not going to make it through the night," Jen said. 

Both boys have had several surgeries at Sanford Children's Hospital to help them with both their eyesight and breathing.  

As you can tell it's helped, a lot. 

But don't be fooled, their breathing problems at first were touch and go.  

"I was so scared to bring him this far away from Sanford because we'd never get him back there in time," Jen said. 

So thanks to the Children's Miracle Network and Sanford Health, doctors helped the Scheff's turn their house into their very own NICU with breathing equipment, monitors and a full time nurse. 

"It took us a while to get use to, because you have other people in your house while you're sleeping, which was kind of strange at first, but we were so exhausted," Jen said. 

Now that exhaustion comes from trying to keep up with these two kids. 

"Most people see them and they don't even know that they've been through what they've been through," Justin said. "If they want to go outside and play and run around, we've gotten to the point where they are healthy enough, safe enough  that they can go do whatever they want at this point." 

One thing the boys really like to do is give back.  

Each year they hold events like a lemonade stand to raise money for the Children's Miracle Network.

"I think it's fun to go out and do that stuff it's not like it's a serious time, it's a fundraiser that is fun for us too," Jaxson said.

Jaxson also wants to be a surgeon when he grows up. 

"I'd love to help CMN and make CMN bigger and discover new diagnosis to the things that are all the kids now  and I might figure out some new ones to make CMN area bigger

As for Jeren?

"I want to be a firefighter, Jeren said.

"So far he's wanted to be a  cop and a boxer, but mom said we don't want your nose to get punched so then he changed to firefighter and he's like Jax they don't want you to be a firefighter so we can stand next to each other, I said I'll be a doctor you have your own future, I want to be a doctor, well he still wants to be firefighter," Jaxson said. 

But today they are both CMN Champions and mom and dad are grateful for the support they've gotten from their small town of Montrose and all the staff at Sanford Children's Hospital

"We are fortunate that Sanford was right here in Sioux Falls and for the most part didn't have to leave and had the specialist who could help us out right here," Jen said. 

This year's fundraiser for the boys is going to be a softball tournament. Information for the event is on the flyer below. 

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