Lexi Gordon loses battle with Tay-Sachs Disease - KSLA News 12 Shreveport, Louisiana News Weather & Sports

Lexi Gordon loses battle with Tay-Sachs Disease, thousands inspired by story

Posted: Updated: March 18, 2014 09:42 PM
Lexi Gordon and her family on a walk. The toddler suffered from Tay-Sachs disease, a rare, terminal illness. Lexi Gordon and her family on a walk. The toddler suffered from Tay-Sachs disease, a rare, terminal illness.
Lexi Gordon was diagnosed at 14 months with Tay-Sachs Disease. Lexi Gordon was diagnosed at 14 months with Tay-Sachs Disease.
BOSSIER CITY, LA (KSLA) -

Two-year-old Lexi Rene Gordon died Sunday after battling a rare, terminal disease called Tay-Sachs. Her journey has inspired countless people in the ArkLaTex and around the nation. 

During her nearly three years on Earth, Lexi never learned to speak, but without even saying a word, she touched many. "I truly believe she is an angel on Earth that we were blessed to meet," said Kassi Robinson, who said her life has been changed forever by the little girl.
     
Robinson is the founder of the Pay it Forward Networking, who used social media to grant Lexi and her family special wishes back in November. "One of Lexi's wishes per her mother, was to have us be her voice," she said. "That is something I will honor for the rest of my life. I will do everything in my life to raise awareness for Tay-Sachs disease."

KSLA News 12 was there in November for an emotional ceremony where New York-based folk singer Jaymay flew in to sing Lexi's favorite song "Blue Skies." That day, both mayors from Shreveport and Bossier City declared Lexi's birthday, March 30, as "Lexi Day."

"The day after the proclamation, it was all over the country, of people being Lexi's voice and raising awareness," Robinson said. "Her parents were so brave to put her story out there."
     
For the past year-and-a-half, thousands of people across the country used social media to follow Lexi's battle.
     
Through that exposure, Lexi's family has been able to raise thousands of dollars for the Cure Tay-Sachs Foundation. "At the end of the day, they are so proud of the mark Lexi has left, but they are also heart broken their baby has gone on to heaven," Robinson said.

The Gordon family finds comfort in knowing Lexi's name will never be forgotten and the huge support group backing them will make sure of it.

Lexi's funeral will be held at 11 a.m. March 6 at the Summer Grove Baptist Church. Visitation will be from 4  to 7 p.m.  March 5 at Rose-Neath's Southside Funeral Home in Shreveport.

If you wish to donate to Cure Tay-Sach's Foundation in honor of Lexi, you can find out more information here.  

Read more about Lexi's story here. 

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