A mother’s courage

There is absolutely nothing this mother won’t do for her child. Nothing.

That statement more than applies to Amber Schacherer of Osceola and her 7-year-old son Owen.

In kindergarten, Owen was diagnosed with Duchenne muscular dystrophy. That is the last thing a mother wants to hear about her young child.

“Three minutes in the doctor’s office and it crushes your whole world,” Amber said, her voice choking up.

What is it?

Duchenne muscular dystrophy is a muscle-wasting disease that affects about one in 3,500 boys.

There is no cure or treatment for Duchenne. It is a terminal illness that affects the muscles, and most boys stop walking between the ages of 8-10 and are non-ambulatory.

Respiratory and heart issues are soon affected, too, because they are muscles. Most boys will need respirators, and the life expectancy only goes to the mid-20s.

If you meet Owen, you would never be able to tell he has had such a serious diagnosis. The first-grader seems like any other boy with an indomitable spirit who loves to play with his NERF guns and bounce off the walls with energy.

There’s a reason for that.

Medical

Right now, Owen is takes deflazocort (prednisone), which is a steroid, and studies show it can keep boys walking longer.

For the past 33 weeks, Owen has traveled to Iowa City every Tuesday in a clinical trial for a drug called Etsplirsen. Owen has an IV port and gets this new drug by an IV. This medical trial will continue for a duration of 96 weeks.

Owen has also traveled to Gainesville, Florida, for an MRI and has had muscle biopsy in Iowa City. He will make these travels again in the spring.

Owen is quite an active young boy. Right now, his energy level is up and he is falling less.

Little things that most people take for granted, like getting up the floor or walking up the stairs, these things can be challenging for Owen. However, this new drug is allowing him to do it a little faster.

“If you don’t know there’s anything wrong with him, you can’t tell,” Amber said.

For boys with Duchenne muscular dystrophy, they are missing a protein called dystrophin. What Etsplirsen is doing is making the protein, but with shorter strands of it.

It’s not a cure, it just slows the progression.

New hope

The hope is the new drug will slow the diagnosis down enough, so one day soon, there will be a cure, and many boys will have lived long enough to see it happen.

Amber said there are lots of boys in the trial who have been in it longer than Owen. They are going on their fifth year, between the ages of 15 and 16, and still walking.

Owen is right on the threshold of the age where it is assumed he won’t be able to walk because of his diagnosis.

There is hope though, because Owen can demonstrate how fast he likes to run.

“We try to make memories, focus on, you know, we have a lot of hope,” she said, choking up. “With him, he doesn’t know everything for down the road. … I mean, he knows his muscles are weak. That’s about all he knows. I guess that will be something I’ll phase down when he’s able to research what it is. We just try to stay positive.”

Sensing his mother’s distress and tears, Owen stopped playing with his toys and came and gave her a big hug.

“Thank you, honey,” Amber whispered to her son.

Knowing Owen

Beyond shooting his NERF guns, Owen also likes tractors, Legos and cats. Amber called her son a “little hunter.”

“I like dinosaurs!” Owen exclaimed at his mother.

During spring break in March, Owen will go to Disney World for his Make-A-Wish trip. He’s most looking forward to the roller coasters.

“I’ve never been on a roller coaster,” Owen said.

Amber said her son also wants to see Mike and Scully from the movie Monsters, Inc.

“Don’t forget Star Wars,” Owen shouted.

Staying the course

Even though there’s a lot to celebrate with Owen, Amber’s mission for her son has never been more clear.

Amber and her mother are traveling to Washington, D.C., where the Etsplirsen drug is up for FDA approval.

If the new drug receives the approval, that means it is accessible to more boys. For Owen and his family, they won’t have to make the weekly trip to Iowa City because the procedure could be done at a local hospital. One day, it could even be done at home.

There’s a reason Amber has been public with her son’s story. Every time her son must fight for his health, she fights harder.

"It's a rare disease, and I just want awareness," Amber said. "I just really want awareness because there's other diseases out there that need recognition and need support and funding and all of that. That's, I guess, the reason I've been so open about it."