Governor Jeff Landry has officially proclaimed December as Sanfilippo Awareness Month in Louisiana, bringing statewide attention to a rare genetic disorder that has deeply affected families— including one very close to home.

Sanfilippo Syndrome, sometimes called “childhood Alzheimer’s,” is a rare hereditary disease caused by the body’s inability to break down certain complex sugars. Over time, this leads to severe neurological decline, affecting speech, mobility, behavior, and cognitive ability. Children often develop normally in early childhood before symptoms emerge and progressively worsen. Currently, there is no cure, making awareness and research crucial.

For our area, the proclamation is deeply personal. Lydia Rachal has captured the hearts of communities throughout North Louisiana. Lydia has become “one of ours” — a child our community has embraced, supported, and rallied behind.

From T-shirt fundraisers to bracelet sales, meal events, and generous donations, the outpouring of support has been overwhelming. As of December 1, supporters have raised a total of $5.45 million for Lydia and other Type B children, helping their family access specialized medical care.

Governor Landry’s proclamation elevates the fight that families like Lydia’s face every day. Advocacy groups hope the official recognition will increase understanding of the disorder, boost research visibility, and encourage earlier diagnosis statewide. The awareness month also provides momentum for fundraising efforts that are vital for families seeking access to treatment options.

Local organizers say the proclamation validates the hard work happening across small towns and rural parishes — people cooking, giving, donating, and coming together for a child whose story has inspired thousands.

As December continues, communities across the region will honor Sanfilippo Awareness Month with outreach, education, and ongoing efforts to show love and support for Lydia and all children facing this heartbreaking diagnosis.

Even across parish lines, one thing remains clear: this community stands together.

For now, Red River Parish continues to do what it does best: show up, stand together, and fight for one of its own.

See proclamation below.