Dementia is a condition that is often associated with mature age. However, one shocked woman revealed how she took her 7-year-old daughter to a usual eye test. That day the little girl was diagnosed with a rare form of dementia. Now the mom spreads awareness about her daughter’s condition and wants every parent to keep a watchful eye on their kids’ state.
The little girl didn’t have any special symptoms.
Isla Edwards was just 7 years old when she was taken by her mom for a routine eye test. The reason for this appointment was that the girl’s vision was a “little fuzzy”.
The mom, Jacquelyn Stockade, recalls, “At this time, there were no signs of anything being wrong with Isla. Her vision was a little fuzzy at long distances, but nothing out of the ordinary for a kid who was on the borderline of needing glasses.”
The routine eye test turned both mom’s and Isla’s lives upside down. After examining the girl, the optician insisted that Isla needed to see another specialist urgently.
The eye test showed the girl had problems with the inside of her eye and Isla had to be taken to hospital for even more tests. A desperate mother drove her child to Texas Children’s Hospital.
The girl’s diagnosis shocked the whole family.
In the hospital, the doctors confirmed that the girl had pediatric macular degeneration. The experts then conducted a genetic test.
“The doctors confirmed that Isla had early signs of pediatric macular degeneration, and a genetic test would need to be done to determine the cause. They swabbed her mouth and gave us a follow-up appointment for August, when the results of the genetic test would be ready,” Isla’s mom recalled.
It was then that the little girl was diagnosed with Batten disease. This is a rare genetic condition that results in the brain shutting down over five to ten years.
The disease starts with subtle symptoms such as vision loss, but people who suffer from it may lose the ability to speak, move, see and swallow.
The girl’s family keep fighting for her well-being and hope only for the best.
Isla’s condition is an extremely rare diagnosis, with approximately 3 in every 100,000 births in the U.S. affected by Batten disease.
According to doctors, the common early signs of Batten disease are “Missing developmental milestones, or actually losing milestones. This is called developmental regression. In some cases, the child or infant may lose vision and start bumping into things, have seizures, or become very unsteady with difficulty walking.”
Three years have now passed since Isla’s diagnosis. The girl is now ten, and she has lost around 90% of her vision. Her parents reveal that she’s a real fighter and is adapting well to the loss.
Jacquelyn said, “We are so proud of where Isla is at today. She has lost a substantial amount of vision since 2021, and she has about 10 percent left. But she still enjoys all the same activities such as swimming, dancing, video games, and has adapted to her current vision level.”
Jacquelyn also shared that the girl is now taking a medication for Batten disease which they “hope and pray” will help Isla in stopping the disease in its tracks.
And here’s an inspirational article about the woman with a rare genetic condition, who doesn’t feel deprived and thrives with her life philosophy.
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