PORT NECHES, Texas — A 9-year-old Port Neches girl is defying the odds and keeping hope alive as she battles a rare genetic condition with no known cure.
Isla Edwards was diagnosed with CLN3 Batten disease in August 2021. Her family said the young girl's positive spirit has remained intact.
“We don't have to lift her up ever,” Jacquelyn Stockdale, Edwards' mother, said. "She's the most joyful person that anyone has ever met."
The illness has left Edwards with only 10% of her vision.
“What she does have is very strained,” Stockdale said. “It's not clear. It's very blurry. But really, for her to be 9 years old and have any vision at all left is a huge miracle and one that we're very thankful for.”
The young girl is not letting her current circumstances stop her from living and learning.
“She's learning braille,” Stockdale said. “She's learning cane training, so she can walk with a white cane."
Edwards and her family have traveled to hospitals across the nation in hopes of finding doctors with new research to help slow or cure the illness.
The young Port Neches girl also wants to be a part of the solution. During a visit to a Maryland hospital, she participated in a natural history study.
“Just from her visit last year, with the skin biopsy that she donated to them, they have made some amazing breakthroughs in research just based off of studying her alone," Stockdale said.
Stockdale said 2023 will be about keeping her daughter healthy as they wait for the trial to finish and for medications to be approved.
"You know, sometimes we do have hard times and hard days,” Stockdale said. “But I'm happy to say that they're very few and far between, and they really help us appreciate all of the good days that we have."
Despite her struggles, for Isla, there are no bad days.
“I never have bad days, because I’m a good girl, and I always love everybody and I always do lots of fun stuff," Edwards said.
Anyone who would like to follow Isla Edwards' story or who wants to support her and her family can go to the Isla's Faith Facebook page or islafaith.com
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