BATON ROUGE, La. (KALB) - Governor Jeff Landry has officially proclaimed December as Sanfilippo Syndrome Awareness Month in the State of Louisiana.

“Childhood Alzheimer’s is a rare disease that should receive more attention, as we push to find a cure,“ Gov. Landry said . ”Louisiana will continue to fight for children like Lydia Rachal and put an end to Childhood Alzheimer’s!”

Recently, KALB spoke with Morgan Rachal , the mother of Lydia, who shared that Lydia will lose the ability to walk, run, jump and dance as the disease progresses. Sanfilippo Syndrome has no current cure and typically limits life expectancy to the teenage years.

Lydia was initially placed on a waiting list for a clinical trial that later shut down due to funding issues. However, research from the trial showed p

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