How a Minnesota 1st grader is making hemophilia less scary for children

ARDEN HILLS, Minn. — An Arden Hills first grader is making a diagnosis a little less scary. 

Seven-year-old Emmett Cordes was born with a rare blood disorder, but through his love of science and storytelling, he's helping other kids like him understand how medicine works in their bodies. 

This isn't your typical adventure book. 

"It does make a big impact and he knows it," Caleb Cordes, Emmett's dad, said.

It's a comic book with a calling. 

"Hemophilia is pretty rare, there's about 30 to 40,000 people nationwide," Melissa Cordes, Emmett's mom, said.

Emmett Cordes is one of hundreds of Minnesotans living with hemophilia A, a rare bleeding disorder that doesn't let blood clot properly.

"The biggest fear for us is always head trauma," Melissa Cordes said. "Right, so if he falls off the monkey bars, in other kids you'd be looking at a concussion protocol but for us it means an emergency trip to the ER so we can infuse that missing clotting factor."

It can be tough for little ones to understand.

"When he was first diagnosed, I was having to explain to a 4-year-old kid why he was in so much pain and couldn't walk and why he needed to be poked by needles every day," Melissa Cordes said. "After explaining to him what hemophilia A was, I said, 'Why don't we draw it?'"

Little did mom know that idea was would spark something greater.

"And then it was the following year that he came home from school one day and said, 'I think I need to draw another comic book. I need to draw one about how my medicine helps, how my medicine makes this better,'" Melissa Cordes said.

And so "Where is Factor 8?" was created — a tale that depicts what's missing from a hemophiliac's blood. And how the medication "Hemlibra" saves the day. 

"With Hemlibra's help they manage to stop the blood," Caleb Cordes read from the book.

"Children's [Hospital] asked if they could print it and hand it out to other kids. So he has sent it to other kids with hemophilia around the country, they pass it out to all of their patients who are getting Hemlibra," Melissa Cordes said. "You've got parents around the country who are having to give their kids shots every other week, every month and it hurts. And it's hard to do something to your kid that you know hurts them, especially when they're too little to understand." 

But Emmett Cordes' advocacy work doesn't stop there. 

Last month he traveled with his parents to Washington D.C., where they advocated for increased awareness of hemophilia A and put a face to some of the insurance problems families like his struggle with.

"It wasn't about any particular current legislation that we were lobbying for, it was more just saying, 'Hey, these are programs that already exist and if they come up for reform we want you to know what they actually look like on the patient level,'" Melissa Cordes said.

A patient experience Emmett Cordes is making a little less scary for other kids just like him.

"It was really important to us that he understand as well as possible why we were doing all of this," Melissa Cordes said.

"It's a wonderful blessing to actually be able to see his book be shared with other kids," Caleb Cordes said.

In typical 7-year-old-fashion, Emmett says his favorite part of the D.C. trip was the hotel.

They got to check out all the spots while they were there and even got some cool souvenirs. 

When Emmett Cordes isn't drawing, you can find him playing with Legos or practicing the violin. 

He's already got another comic in the works, this time about a gene therapy treatment for hemophiliacs.