SHREVEPORT, La. (KTAL/KMSS) — A mother fighting for her 3-year-old daughter is on a mission to raise $6 million for a potential treatment awaiting FDA (Federal Drug Administration) approval.
Lydia, a bright, fun and loving little girl living with a rare and terminal genetic disorder called Sanfilippo Syndrome, often referred to as childhood Alzheimer’s, was diagnosed at just 18 months old, her mom says there’s now a glimmer of hope.
“A week and a half ago, we found out that a potential treatment option could become available,” Morgan said. “The pharmaceutical company is sending the medicine to the FDA for approval, and while that process could take a year or more, they plan to make extra doses for children waiting in the meantime.” The treatment has shown promising results in reducing toxic buildup that leads to brain damage, offering a lifeline for Lydia and other children like her.
Food drive at Billie Eilish’s New Orleans shows
Right now, the only obstacle is funding. Families across the country are coming together to raise $6 million to secure the medication for 15 children, with $3.8 million needed by December 1st. So far, Morgan and her supporters have helped raise more than $730,000 toward that goal and she says she’s keeping her faith strong…