(RightWing.org) – Typically, when a news story breaks about doctors diagnosing someone with dementia, people assume the afflicted person is elderly. Sadly, that wasn’t the case with a recent report detailing the case of a seven-year-old after a routine eye examination.
On September 10, Newsweek’s Family & Parenting department published an article discussing the heartbreaking story of a school girl named Isla Edwards. School officials administered a routine eye test to her two years ago when she was in first grade. She had complained about experiencing some “fuzzy” vision at long distances.
The eye exam indicated she might need glasses. So, her mother, Jacquelyn Stockdale, took her to an eye doctor for further testing. Unfortunately, further examination revealed that Edwards was suffering from Batten disease.
Formally known as neuronal ceroid lipofuscinosis, Batten disease is an inherited nervous system disorder that usually presents in early childhood. The National Institute of Neurological Disorders and Stroke reports that typical symptoms include:
- Progressive loss of vision that eventually leads to blindness
- Dementia
- Movement disorder
- Seizures
Unfortunately, there isn’t a treatment available to reverse the effects of Batten disease. In April 2017, the US Food and Drug Administration (FDA) approved the use of a drug called cerliponase alfa to slow the disease’s progression. That medication, administered alongside occupational and physical therapy, can help individuals afflicted with a particular variant of the disorder to retain walking ability for “as long as possible.”
Sadly, recent studies confirmed that over time, those symptoms worsen, leading to the progressive loss of speech and language skills, learning difficulties, and insomnia. Eventually, children suffering from Batten disease become bedridden and typically die in their early 20s.
Stockdale told Newsweek that her daughter lived a perfectly normal life at the time of her diagnosis, except for her vision problems. Stockdale said initially, she couldn’t grasp that her “perfectly healthy child” was suffering from a devastating, fatal disease. Sadly, she reported that her daughter has now lost 90% of her vision. However, the family isn’t giving up and is paying for an FDA-approved drug treatment for another disease, currently undergoing clinical trials for Batten disease.
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