Being near the ocean helps Betti Lidsky keep her focus.
"It's just helped me a lot to emotionally deal with this challenge," Betti Lidsky told Action News.
She's had her sights set on finding the cause of her children's blindness for nearly two decades. Three of Betti's four adult children were all diagnosed with retinitis pigmentosa in their teens.
"From the moment they were diagnosed, our mission was to find the answers," Betti said.
That's where researchers at the University of Miami come in. More than 50 genes are known to be responsible for RP, but none of them caused it in the Lidsky family. To find the gene, researchers used whole exome sequencing. The new technology can decode the one to two percent of the genome that contains protein-coding genes.
"Over the next few years, we'll see a lot of families like the Lidskys who will get to know what is actually causing their problem, and once we have that, then it will certainly move us ahead toward therapies," Jeffery Vance, Ph.D, M.D., at the University of Miami Miller School of Medicine, said.
"It was very wonderful news. Privately, we cried a lot, and we called the kids right away," Betti said.
Now, grown with their own families, the Lidsky kids are hopeful for the future.
"We're thrilled. We couldn't be more excited about it," Daria Zawadzki, who has RP, said.
"Treatments and cures premised upon genetic therapies or the knowledge of our genome now becomes a possibility," Isaac lidsky said.
A discovery that's changed this family's life and could one day help many more. About six-million people in the United States are affected by RP or macular degeneration, another retinal degenerative disease.
To combat these diseases, the Lidsky family founded hopeforvisiondot.org. So far, they've raised millions of dollars all over the country to help cure and treat blinding diseases.
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University of Miami Miller School of Medicine