Rare Genetic Disease Attacks White Brain Matter of Girl, 5

Five-year-old Lexi Drumm struggles to say even the simplest words.

In fact, talking isn’t the only thing that is a struggle for the little girl from Belmont, N.C. She can’t feed herself, she can’t walk, and even breathing is difficult.

“She has to have everything done for her,” said Lexi’s mom, Sherry Drumm.

Lexi suffers from a rare type of Leukodystrophy, a congenital hypomyelination, reports the Gaston Gazette. She was one of 200 people in the world who had the neurological disorder when she was diagnosed in 2004.

Essentially, the genetic disease is attacking Lexi’s white brain matter, which contains nerve fibers. This makes it difficult for Lexi’s brain to communicate with other parts of her body, Drumm told the newspaper.

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Lexi was born healthy and could even walk and talk up until she was 14-months-old. That’s when she had a seizure and “everything deteriorated from then on,” Drumm said.

Now the disease has started attacking white matter on Lexi’s brain stem and she is unable to move her head and eyes. She can still control her smile.

"I could be in the worst mood possible, and that little smile can still perk me up," Drumm said.

Doctors told Drumm last summer that she needed to prepare for her daughter’s death, but Lexi has miraculously survived.

Still, she has seizures often – sometimes four in one weekend. And, Drumm worries each seizure could be Lexi’s last.

The life expectancy for such a disease is three to 10 years and doctors aren’t sure there will be a cure in Lexi’s lifetime.

Still, Lexi’s mom isn’t giving up, which is why she took her daughter’s story public. She is hoping to start an organization dedicated to raising awareness for this disease.

Click here to read the full story from the Gaston Gazette and to see a picture of Lexi.