Unlike similar efforts during the school year, the coin drive spearheaded in Wewahitchka by the elementary school’s pre-K students evolved from a more personal connection.

Unlike similar efforts during the school year, the coin drive spearheaded in Wewahitchka by the elementary school’s pre-K students evolved from a more personal connection.

Two children in their community are afflicted with Sanfilippo Syndrome, two names, Ross and Meredith, two faces they see or are familiar with.

So there were plenty of wide smiles Monday morning when the kids presented the proceeds of their coin drive, $600, to Ross and Meredith’s mother, Jessica Davis, to be donated to the Cure Sanfilippo Foundation.

The money is badly needed for a race that is, quite literally for the Davis family, against time.

Sanfilippo Syndrome is an astoundingly rare disease which impacts young children. The first signs in Ross appeared around age 5.

The disease is hereditary; both parents must carry the recessive gene with the odds 1 in 4 their child will be afflicted by the disease.

For Jessica and her husband, those odds were meaningless; Ross and Meredith both ultimately tested positive for the disease.

Without becoming bogged down in the dense vernacular of medicine, Sanfilippo Syndrome is caused by the absence on a DNA strand of a single enzyme, the lack of which causes individual cells to be unable to properly “flush” themselves of toxins, waste.

Those symptoms, that chemical reaction, manifests first in the central nervous system, especially the brain.

Due to the symptoms, progressive dementia, extreme behavior and sleep disturbances, seizures, it has become known as “Childhood Alzheimer’s.”

There is no known cure, in fact the disease, affecting 1 in 700,000 births worldwide, is so recently diagnosed and understood, that medicine is playing catch up.

The ultimate goal is to develop a pre-natal test to identify the syndrome.

In Ross’s case, a normal child began at 5 to develop memory loss and other symptoms and due to the rarity of the disease he was nearly 6 before his diagnosis.

Now, at 9, he requires a wheelchair, is unable to speak, has significant sleep issues, suffers from seizures and has begun to have difficulties swallowing, all signs of the progression of the disease.

“He is in there, he just can’t get out,” Jessica said.

The average life expectancy of a child with Sanfilippo Syndrome is 10-12 years; his parents understand there is no hope for Ross.

“There are a lot of kids like Ross and Meredith who will always be sick,” Jessica told the children in Darlene Ake’s classroom as they presented her with a larger-than-life check.

“But with this money you can help find a cure. We need money to find the medicine that will be a cure. One day children like Ross and Meredith will get to be better.”

Research is painfully scarce and underfunded.

Meredith was in a clinical enzyme-replacement trial that was, at least, holding the symptoms at bay, but the pharmaceutical company underwriting the trial recently cancelled it due in a business decision.

The research is expensive and, Jessica and the Cure Sanfilippo Foundation noted, lacks the end results for pharmaceutical companies in the form of any kind of profits, at least anytime soon.

There are private interests working to produce research across a number of potential treatment fronts, but Jessica said the reality is that if Meredith is not going to get that help within the next six months or so, it would likely be too late.

Meredith just turned 5, by all appearances a normal child, just like Ross.

And her two children’s ages presents Jessica with a Sophie’s Choice dilemma no parent should face.

Meredith is the same age that Ross was when he began showing symptoms of the disease; how soon before Meredith’s walking, talking, laughing days begin to fade?

“We are trying to enjoy what’s left of her good days,” Jessica said. “But you are torn. When I am enjoying good days with her, am I taking away from Ross (whose days are certainly numbered)?”

Jessica said life is simply a one-day, one-step, one-breath at a time proposition.

“You are in the trenches and you are doing everything you can,” she said. “You have to live in the moment.”

“Faith” has kept her upright and strong for her children and for a husband she said struggles with the situation a bit more than she.

Also helping, no matter how briefly, are moments such as Monday, when a classroom, and by extension the community that helped fill those boxes placed around the community with pennies, nickels, dimes and quarters, provided a symbolic hug.

“It does help,” Jessica said.