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‘Super Hero Blood’ Helping 7-Year-Old Battle Rare Genetic Disease

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Monday, November 27, 2017

Landen has "super hero blood."

He came all the way from Michigan to get his blood genetically modified to help him battle a rare brain disease.

Like a lot of 7-year-olds, Landen is a pro on the iPad. But Landen gets a lot of extra practice, because he can't go to school or play outside.

His immune system can't handle it.

"We're here nonstop until we make our daily doctors' appointments," said Scot Veneklase, Landon's dad.

Landen has Adrenoleukodystrophy (ALD), which is a rare genetic brain disease.

"Most hospitals don't even know what ALD is," said Priscilla Veneklase, Landon's mom.

In fact, Priscilla didn't find out she was a carrier until her dad, cousin and several other boys in her family mysteriously died.

"Just happened to run into another doctor who put our family tree together and we were losing so many boys in our family," Priscilla said.

Girls can be carriers, but the devastating symptoms only show up in boys.

So when Landen was born, they were able to be proactive. Every year Landen had an MRI to watch for signs of ALD. Those signs showed up this year.

"Once we found out he had a lesion on his MRI, we were already set up with the [University of Minnesota] to come here and get the ball rolling," Priscilla said.

The University of Minnesota Masonic Children's Hospital is one a few that not only knows ALD, they have some of the top specialists.

Landen is one of eight kids in a clinical trial.

"So they took out some of his stem cells and platelets," Scot said. "They shipped them off to get corrected."

Landen's stem cells were sent to Texas to be genetically modified, which he calls "super hero blood."

Once they're corrected, they come back to Landen.

"I get super powers," Landen said.

While Landen waits for his super powers, he's fully embracing his time in Minnesota.

"The Community here has been amazing," Scot said. "The Minnesota Vikings came by. When we get those visitors, it takes our mind off what's going on."

And while Landen might dress up as Spiderman, there's no question he's the real super hero.

"I think this is going to be our best year yet," Scot said.

Landen's parents say the prescreening made all the difference.

Minnesota is one a few states that does ALD screening on newborns. But many other states — including Michigan — still don't.
Landen's family is working to change that.

Author: Kylie Bearse
Source: CBS Minnesota
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2.7 from 3 votes
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