Two central Wisconsin parents fight to find a cure for their two - WQOW TV: Eau Claire, WI NEWS18 News, Weather, and Sports

Two central Wisconsin parents fight to find a cure for their two sons' rare disease


Maria and and Kevin Bacon are fearing the worst.

"It's hard to live every day knowing that you are going to lose your child," Maria Bacon said.

Their two sons, Joseph,9, and Oliver who turned two on Sunday, are suffering from a rare genetic disease called GM1 Gangliosidosis.

The disease occurs in one of every 200,000 births.

"It's going to go from healthy to worse and worse and it is going to take his life and that is hard to think about," Kevin Bacon said,

Maria and Kevin did not know they were both carriers of the disease until Joseph was diagnosed.

"Joseph was normal when he was born and grew and hit all his milestones, like anyone would expect," Maria said. "When he was about three, we started to notice some quirks in his development."

After learning of Joseph's diagnoses, the Bacons quickly learned that their youngest son Oliver had the disease as well.

The rare disease currently has no treatment or cure.

"They will lose their ability to walk and talk and just control all their bodily functions and eventually it will kill them," Maria said.

Oliver currently doesn't show any symptoms, but that will likely change.

"Oliver right now is developing normally, it's hard to know that all these things hes gaining right now he will lose," she said.

For Oliver's second birthday, the Bacons are hoping to raise enough money to help with research efforts to find a cure for the boys.

"That is why we are really trying to push for research so that we can have hope because there is hope," Maria said. "We would like to have them with us as long as possible."

You can donate here to the Bacon family's research fund. 

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