Lexi For Life
Young Lexi battles terminal illness as her parents work for a cure
Bryan and Tracy Gordon realized their youngest daughter, Lexi, was not developing like other children when she was a year old.
The 12-month-old had not hit motor skill milestones like sitting up, standing on her own, and walking.
At first, Lexi was misdiagnosed with autism- an outcome her parents now wish had been true. After months of tests and treatments, Bryan and Tracy finally found out little Lexi has Tay-Sachs disease.
"I said, 'Is this life or death?'" Tracy Gordon remembers. "[The geneticist] said, 'If not worse.' What she means by that, now I know, is because you're going to watch her disintegrate."
Stationed out-of-state with the US Army, the Shreveport natives asked for a compassionate reassignment back to their home state. Two months later, they are close to family, who they rely on for help with daily tasks and moral support.
"The one thing this has taught us is to take each day like it's your last because we know for a fact that her days are basically numbered," Bryan Gordon says of the Tay-Sachs life expectancy. "We know that she has two to three years."
Part of what makes this disease so devastating for the Gordons, is that they never knew it was a possibility. Both parents are genetic carriers but had never heard of Tay-Sachs before Lexi's diagnosis. Their oldest daughter Lena, 4, They say a lack of awareness keeps researchers from reaching a cure.
Now the Gordons are taking things into their own hands. They're raising awareness on the website lexiforlife.com and on their Facebook page Prayers for Lexi.
Bryan and Tracy say Lexi's story has spread farther than they ever expected. From Bryan's former Army colleagues in Afghanistan to well wishers in Mexico, people around the world send them heart-warming messages as well money to cover medical expenses and travel costs.
"Everybody gets into their daily routine and takes things for granted," Bryan says of his Lexi's impact on others. "She's kind of made people step back and examine what's really important."
The Gordons say they know a cure will not come in Lexi's lifetime, but they hope to spare other families the same pain.
You can donate to research through the Cure Tay-Sachs Foundation.
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