Ella’s Hope raising awareness for Rett Syndrome

Published: Oct. 16, 2019 at 10:31 AM CDT
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LAKE CHARLES, La. (KPLC) - The month of October is a time to raise awareness for things like Domestic Violence and Breast Cancer awareness, but also Rett Syndrome. Ella is five-years-old and she has this condition.

“At the start she was able to say words to me,” Ella’s mom Lauren Bannon said. “She said momma and dada, and she could play with toys like a normal child.”

When she was about two-years-old, her parents started noticing a decline in Ella’s health. She was misdiagnosis with Autism, but another doctor told her parents Ella had Rett Syndrome -- a genetic mutation.

“Her symptoms are Autism, Cerebral Palsy, Epilepsy, Parkinson’s, severe anxiety disorder. All in one little girl,” Ella’s dad Shaine Gaspard said.

About one in 10,000 girls are diagnosed with Rett Syndrome each year. Lauren says upon getting Ella's diagnosis, it took a heavy toll on their family.

“I just locked myself in the room and cried for days and days,” Bannon said. “Then I came out and told my husband I can’t do this anymore I need to put on a brave face and get out here and do something.”

It’s safe to say they are touching lives, because Claire Weeks is a friend of Ella’s and a student at Our Lady Queen of Heaven decided to tell her classmates about Rett Syndrome.

“She’s really nice, she really is and it feels cool to be one of those people that tell other people about stuff like that,” Weeks said.

Her parents say it’s that kind of love and exposure that will help find a cure for the condition.

“A lovely thing for a child of her age to even think of,” Bannon said. “Some kids out there want to right about something else and she just didn’t think about herself for one second and said I’m gonna promote Ella.”

While they wait on a cure, Lauren and Shaine plan on cherishing their time with Ella and listening to a song about the story of Ella’s life -- written and performed by a band in her mother’s homeland of Ireland.

“Today may be the best day she has because the condition worsens as she get older,” Gaspard said.

When it’s all said and done.

“You know, Ella’s a gift, that’s the way I see it.”

Ella's non-profit organization has donated more than $100,000 dollars to help find a cure. Her parents say they will continue to donate 100-percent of the funds until people with Rett Syndrome everywhere can be cured.

To learn more about Ella’s condition and how you can help donate, visit her website.

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