‘There is no cure for this’: Rare disease causing 6-year-old girl to age rapidly

NASHVILLE, Tenn. (WSMV/Gray News) - A young girl in Nashville is battling a rare disease and her father is looking for answers.

Single father David Garcia says he has been worried about his daughter’s health for months after he and her elementary school teacher noticed something was off regarding her movement.

According to Garcia, his daughter Khloe must wear thick glasses to help with the rapid vision loss that she is experiencing. She must also use a walker to get around.

“It’s really clear by this time next year, she is not going to be able to walk independently at least for long periods of time,” Tara Coogan, Khloe’s kindergarten teacher, said.

Khloe first came to Coogan’s classroom last August, and she was the typical 5-year-old student learning how to spell, read and enjoying her time at recess.

However, in November that started to change.

“She was bent over at the waist and couldn’t open her backpack by herself,” Coogan said. “That was something she was doing by herself just the week before.”

Khloe was taken to a doctor where she was diagnosed with metachromatic leukodystrophy. It’s a rare genetic disorder that affects the brain, the nervous system, and takes away motor skills.

“The first time they told me what it was, I said it’s not possible,” Garcia said. “There is no cure for this, only treatment.”

Dr. Thomas Cassini at Vanderbilt University Medical Center says he works with patients who are battling metachromatic leukodystrophy.

“I really feel for this family or any family that is going through something like this,” he said.

According to Cassini, it’s a fatal disease, but those who have it can live until their 20s and 30s if they are given a new treatment.

“The FDA has approved an autologous stem cell gene therapy treatment for this,” he said.

It’s expensive and only offered at a few hospitals across the county, which Garcia is visiting to find the best fit for Khloe.

“Every single day I have to watch my daughter, and I have to find out a way to stop this disease,” he said.

That’s why Garcia said Khloe’s graduation from her kindergarten class this year meant everything to him, being able to take a photo standing beside him -- something they may not be able to do again.

“Her mobility is declining rapidly, so even if she’s at her fifth-grade graduation, I don’t think she will be as mobile as she is now,” Coogan said.

If they can get the treatment, Garcia said he sees many graduations in Khloe’s future.

“That’s my baby,” he said. “I love her so much. I don’t want to think someday that I’m going to lose her; she’s everything to me.”

Khloe’s teachers started a GoFundMe to help raise money for her treatment. Doctors said it’s rare for insurance to cover it, and it could cost hundreds of thousands of dollars or more.

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