Henry Has Classical Ehlers-Danlos Syndrome

Little Henry and his family are struggling with Classical Ehlers-Danlos Syndrome.  It took a year to be diagnosed. Now that the cause of his symptoms has been identified, his parents can better care for him. 

By: Malorie Maddox.

Henry_1Their one-year-old was constantly covered in bruises. A simple fall would end with him in the emergency room. Tonight, how the University of Nebraska Medical Center was able to figure out the cause behind Henry Bevirt’s pain.

Henry Bevirt is curious, energetic, and he has no trouble keeping up with his twin brother.

Henry was just one-year-old when his world changed forever.

“My momma gut told me that there was something wrong with him.” said Henry’s mom, Kristi Bevirt.

It all began with bruises on Henry’s legs. They just wouldn’t heal.

“We had gone four or five months and they weren’t healing.” said Kristi.

It wasn’t just bruises. When Henry would take a small tumble, it would end with a big gash.

He ended up in the Emergency Room multiple times.

Kristi says it was tough. “My biggest fear as a parent was that someone was going to turn us in for child abuse.”

Kristi and Jeff, Henry’s dad, wouldn’t give up on trying to figure out what was wrong with their son.

“We saw two hematologists, a geneticist, and orthopedist…”said Jeff Bevirt, Henry’s dad.

It took a year…and five sets of stitches.

“Three in his head, two in his leg, and he also had one set of glue in his head…” said Kristi.

At this point, the Bevirts were put in touch with Dr. Lois Starr, a Clinical Geneticist with UNMC.

She immediately knew what they should test for.

“It’s very rare to be diagnosed that young.” said Dr. Starr.

Henry has Ehlers-Danlos syndrome, Classic Type, a rare genetic disease.

There is no a cure, but once a diagnosis is made, Henry’s care and treatment can be more effective. 

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