This morning LIVE on Talkback Natchitoches, Latorria Freeman and Pastor Steve Harris raised over $1,000.00 in cash, checks and promised donations to help Save Lydia!
Background:
Race Against Time: Louisiana Family Fights to Save 3-Year-Old Daughter from Fatal Disease
Natchitoches family seeks $6 million to fund life-saving treatment for daughter with rare genetic disorder
When Morgan and Kirk Rachal brought their daughter Lydia home three years ago, doctors said she was perfect. For 18 months, life in Natchitoches, Louisiana, seemed complete as big sister Heidi delighted in her new best friend.
But on April 4, 2024, everything changed. Lydia was diagnosed with Sanfilippo Syndrome type B, a rare and terminal genetic disorder with a life expectancy that typically doesn’t extend past the teenage years.
The diagnosis came through an unlikely source—a TikTok video. Morgan’s mother sent her a clip of a little girl who looked like Lydia. When Morgan learned about the child’s terminal diagnosis, she researched the disease and recognized symptoms in her own daughter: frequent ear infections, sleep disturbances, and a distended belly.
Despite odds of 1 in 70,000, their Natchitoches pediatrician ordered testing. A week later, the results confirmed Morgan’s worst fears.
Sanfilippo Syndrome causes the body to lack a crucial enzyme needed to break down sugar molecules, leading to toxic waste buildup throughout the body and eventually the brain. Often called “Childhood Dementia,” children gradually lose everything they’ve learned before death.
Brain damage typically begins around age 3 or 4, giving the Rachals roughly a year to act. But there’s hope: a treatment option has emerged through clinical trials. The family needs $6 million to fund it—$3.8 million by December 1, 2025—with treatment potentially available by summer 2026.
Their GoFundMe campaign has raised over $1.4 million. All donations to the Cure Sanfilippo Foundation are tax deductible.
“We can’t just sit back and accept that she is going to die with knowing there are treatments out there,” Morgan said. “This is our last chance to save her life before brain damage begins.”
To donate, visit gofundme.com/f/SaveLydia
