7-year-old Michigan boy battles rare genetic disease

Source: CNN

A seven-year-old boy from Michigan is having his blood genetically modified to help fight a rare brain disease.

Like a lot of kids his age, Landen is a pro on the iPad. He gets a lot of extra practice, though, because he can't go to school or play outside.

His immune system can't handle it.

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

Landen has a rare genetic brain disease called adrenoleukodystrophy (ALD).

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

In fact, Landen's mom 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 that put all our family tree together and we were losing so many boys in our family,” she 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, which they found this year.

"Once we found out he had a lesion on his MRI, we were already set up with to come here and start getting 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, they shipped them off to get corrected,” Priscilla said.

Landen's stem cells were sent to Texas to be genetically modified. 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 the Twin Cities.

"The community here has been just amazing. The Minnesota Vikings came by. It's nice too, when we get those visitors it takes our mind off what's going on,” Scot said.

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

"Landen is amazing, aren't you buddy? I think this is going to be our best year yet,” Scot said.

Minnesota is one a few states that does ALD screening on newborns. Landen's parents said the pre-screening made all the difference.

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