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Lexi Gordon died March 2, 2014, just days before her third birthday.
Everyone has a story and a purpose. The people and things we see with our eyes don’t always reveal the full story, but knowing it may make you more aware of your own circumstances.
As I walked into the office of Tracy Gordon, an overwhelming sense of love and loss seemed to be present as I looked at all the photos of her daughter, Lexi Gordon. By looking at all the smiles and togetherness in each photo one would never be able to fathom the unimaginable battle behind it all. As I stood waiting to meet a mother who endured an inconceivable loss of her daughter, I thought of all the people that didn't know her story. Being able to see the photos and customized gifts on the wall with her name on them, I began to think of what someone else would want to know: who is Lexi Gordon and how did this all begin?
Lexi Gordon was born on March 30, 2011, in Junction City, Kansas. Tracy and Tim Gordon believed their daughter was perfectly healthy when she was born. No one ever suspected that anything was wrong until Tracy found herself consistently checking boxes indicating that Lexi was not reaching her milestones. “She did laugh and smile, but never did walk,” Tracy said.
Although Lexi was sitting up, Tracy and Tim began to notice that when left unsupported, she would have difficulty and eventually fall over. Tracy hoped that perhaps Lexi was a late bloomer or maybe she would skip crawling altogether and learn how to walk. That hope faded as Tracy and her husband noticed the frequency of Lexi’s loss of ability in trying to sit up. At this point they knew that Lexi needed to see a physician, who diagnosed her with having autism and recommended further treatment. Instead of spending her days enjoying life as a toddler, Lexi worked with a speech therapist, an occupational therapist, and a physical therapist. Going through the therapy programs and seeing further decrease in her abilities led to seeing a pediatric neurologist at Bethesda Medical who finally decided to admit them. With so many questions looming in the air, Tracy did what any other mother would do – she demanded answers.
After months of making lifestyle and diet changes and seeing Lexi through several seizures, their answer finally came by way of Dr. Lichter, a geneticist at Bethesda Medical. There, the Gordon’s learned that they both tested positive as being carriers of Tay Sachs, a rare genetic disease that often claimed the lives of young ones before the age of four. A whirlwind of emotion immersed their minds as they faced the thought of watching their daughter eventually deteriorate into nothing. After suffering so long with the disease Lexi Gordon ended the fight peacefully on March 2, 2014, just days before her third birthday.
With so many people that we see living out their lives it’s hard to imagine that 1 in 25 of those native to Louisiana are carriers for Tay Sachs Disease and don’t know it. Tracy Gordon left me with this thought that she wanted everyone to know, “I want people to continue to keep Lexi’s voice alive by keeping the awareness of the disease going. Everything that happened with my daughter brought a lot of people in the community together, so everyone should know and be tested.”
By Chante Hood