Hope for Lydia: Louisiana family’s fights to save 3-year-old with Sanfilippo Syndrome

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.

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.

You can support Lydia’s journey and help bring this potential treatment to families by donating to the official GoFundMe campaign.

Follow Morgan’s journey and Lydia’s story on TikTok to see how your support is making a difference.