Nashville 6-Year-Old Appears to be Aging Backwards, Urgent Search for Treatment Underway

A 6-year-old from Nashville seems to be aging backwards: an urgent search for her treatment now

In an unusual and heartrending case emerging from Nashville, a 6-year-old girl appears to be demonstrating a phenomenon effectively termed as aging backwards. While her peers jive joyfully in the normal rhythm of childhood, she is found teetering on the thin line where the effects of seemingly reverse aging may pull her back from a vibrant childhood.

A worrying observation

A typical 6-year-old should be gleefully running around, making visible progress in scribbling letters, and in the early stages of reading. That’s precisely what this Nashville girl was doing until her teacher and father began noticing the disturbing signs. David Garcia, a single father, began observing an unusual progression of rapid vision loss and motor skill degradation in his daughter, Khloe Garcia.

“It’s very hard, especially when you live by yourself,” expressed Garcia. “You don’t have nobody to talk. You have to do everything on your own.”

What has changed?

Khloe Garcia, studying at Glengarry Elementary School, was an active child like her peers until the ominous signs of change became evident. In her kindergarten class, Khloe has seen her mobility significantly reduced over time and now has to use a walker to move about. Furthermore, she has to use thick glasses to compensate for her deteriorating vision.

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

A rare genetic disorder

The medical diagnosis of Khloe Garcia revealed a rare condition called Metachromatic leukodystrophy, a genetic disorder that systematically impacts the brain and nervous system, leading to a progressive loss of motor skills. “There is no cure for this, only treatment,” said David Garcia.

According to Dr. Thomas Cassini from Vanderbilt University Medical Center, who works with patients grappling with leukodystrophy, the disease, while fatal, can be managed using a new treatment that can prolong the affected children’s lives into their 20s and 30s.

The treatment

Earlier this year, the FDA approved a new autologous stem cell gene therapy treatment for this condition. However, the prohibitive costs associated with the treatment and its limited availability at only a few hospitals across the country are major constraints for David Garcia, who is tirelessly exploring potential treatment options for his daughter.

The hefty expenses of the treatment, ranging from hundreds of thousands to millions of dollars, are rarely covered by insurance policies, putting a significant burden on the affected families. To help with the financial aspect, Khloe Garcia’s teachers began a GoFundMe campaign to raise money for her treatment.

Moving forward

Despite the overwhelming challenges and rapid decline in Khloe’s health, David Garcia is determined to fight for his daughter. “Every single day I have to watch my daughter, and I have to find out a way to stop this disease,” he stated.

While the future might look grim, he is optimistic and holds firm to the hope that with the right treatment, he can ensure many more graduations in Khloe’s future. “That’s my baby,” he expressed emotionally. “I love her so much. I don’t want to think someday that I’m going to lose her; she’s everything to me.”

Conclusion

This case, while tragic, is a stark reminder of the relentless battle many families fight against rare genetic disorders in their loved ones. Through the community’s support and medical advancements, families like Garcia’s can access much-needed treatment and hold onto hope for a better tomorrow.