Young Girl Has Eye Exam And Ends Up With Rare Diagnosis But Her Community Band Together To Help Her & Her Family

Sep 20, 2023 by apost team

Kids are supposed to enjoy their childhood because not only are these the years where they learn and explore a lot of things, but they also determine the way kids interact with other people in the future.

Unfortunately, for a little girl named Isla Edwards, things were a bit different as she was diagnosed with a rare disease which her family found out during a routine eye examination.

Her mom, Jacquelyn Stockdale, spoke with Newsweek in September 2023 to recall what happened to her and the girl upon finding out the news about her health.

When Isla was 7 years old in March 2021, she underwent an eye examination, which revealed she might need glasses due to her long-distance "fuzzy" vision issues. Aside from her eye problems, the mom told the outlet that she had no other issues with her health.

Stockdale later noted that the doctors told her Isla had early signs of “pediatric macular degeneration” and a genetic test was the only way to find out its cause.

After they got the results, it was confirmed that she had CLN3 juvenile Batten disease, a medical condition wherein a person could experience dementia at a young age, seizures, blindness, delayed development and even premature death. 

According to Boston Children’s Hospital, the rare genetic disorder has no cure.

"I was told that Isla would very soon lose her vision completely, develop childhood dementia and epilepsy, that her mental cognition would start declining, and that her physical abilities would also start to deteriorate,” the mom revealed.

She added that the life expectancy for someone who has this type of condition would be “late teens to early twenties.”

Stockdale created a GoFundMe page for Isla and explained in the caption that although there wasn’t a cure for her Batten disease, there were medical treatments that were aimed to slow down the progression of her condition. 

She did her best to research more about medications for the little girl, and she later found out that there were a few specialists who were willing to try and do their best. Unfortunately, she revealed in a blog called Isla’s Faith that these medical experts were all around the United States and it would be a challenging and strenuous journey. Fortunately, for the family, there were people in their community who helped them raise funds for Isla's medication.

In a report by 12NewsNow uploaded in November 2021, one of the people who had a kind heart, Gabriel Blanco, the owner of Buckstin Brewing Co. organized a benefit at her brewery which donated all the proceeds to Isla, and they even named a beer that they sold inspired by her. The girl, who was 8 years old at the time of the event, spoke with the outlet and said, in the sweetest voice, “(it) makes me feel happy.”

In a 2023 update by Newsweek, Stockdale said her daughter had already lost 90 percent of her vision two years after her diagnosis, but they were still determined to fight.

“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,” she said.

Despite Isla's health problems, the family remained positive as they didn't treat her vision loss as something that was broken in her, but rather, something that would make her feel stronger.

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What do you think of Isla Edwards’ medical condition? Is there something you think could be done to help this little girl? Let us know your thoughts, and make sure to pass this on to your friends and family.