For Stevens Point News

STEVENS POINT — A Stevens Point family has launched a month-long, online fundraiser in honor of their one-year old son’s second birthday on June 3, hoping to fund research to save his life and the life of his older brother.

Oliver Bacon, 1, and Joey, 9, have a rare, neurodegenerative disease called GM1 Gangliosidosis. This illness is always fatal in children and over time robs them of their ability to speak, walk, swallow, and eventually move. Their parents, Kevin and Maria Bacon, are working against the clock to help fund research for their children. There currently is no cure, or treatment for the disease.

There are treatment options that have shown to be promising in laboratories but need funding to be brought to trials. The Bacons want to help raise money to bring those treatments to trial as soon as possible to try and save both of their children.

“Oliver is asymptomatic at this time and researchers say he could benefit greatly if trials become available before he starts to show symptoms,” says Maria. Thousands of children world-wide could benefit if treatments were found in time.

Joey was born without any symptoms of GM1. Eventually, his parents started to notice gradual developmental delays that seemed to progress over time. When their doctor made the fatal diagnosis of GM1 Gangliosidosis (type 2), they were devastated. They realized they would need to have their youngest tested to see if he also had the disease. He did. Oliver was a year old when they found he also carried the defective genes. The disease is genetic and because both Kevin and Maria are carriers, each of their children had a one in four chance of receiving both defective genes and having the disease.

To make donations to the Bacon’s online fundraiser during the month of June, please visit: www.Hopeforjoeyandoliver.com , which will take you to their Crowdrise campaign. The family hopes to raise $20,000. The money goes directly to the Cure GM1 foundation to fund multiple research efforts to find treatments and a cure for GM1.

Find more information about the Joey and Oliver on their facebook page: https://www.facebook.com/hopeforjoeyandoliver/