A mother was left heartbroken after her daughter’s routine eye exam at school revealed that she had a fatal disease that causes dementia.
Jacquelyn Stockdale and her daughter Isla Edwards went to an optician after it was suggested that the young girl should get eyeglasses.
The mom was devastated to learn that her daughter’s struggles were worse than they thought as Isla was diagnosed with Batten disease.
Batten disease is a rare genetic condition that causes delayed development, dementia during childhood, blindness, seizures, and even premature death.
The condition is one of the most common forms of childhood dementia. It also causes a range of severe symptoms such as loss of ability to talk and walk as well as deterioration of brain cells.
Speaking to Newsweek, Stockdale said: “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 mother revealed that doctors confirmed that her daughter had early signs of pediatricmacular degeneration and that a genetic test would be performed to determine the cause.
“I was told that Isla’s genetic panel had come back positive for a diagnosis of neuronal ceroid lipofuscinoses. Upon further explanation, we learned this disease is more commonly known as CLN3 juvenile Batten disease, a very rare, extremely devastating fatal illness with no treatment or cure,” she expressed.
The mother was told that her daughter would lose her vision, develop childhood dementia, and that her physical abilities and mental condition would deteriorate.
“The life expectancy for a child with CLN3 was late teens to early twenties,” she added.
Now 10, Isla has lost 90 percent of her vision but her family says her vision impairment is a ‘strength’ and not a weakness.
“We are so proud of where Isla is at today,” Stockdale says. “She has about 10 per cent left. But she still enjoys all the same activities such as swimming, dancing, video games, and has adapted to her current vision level.”
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