RANTOUL, Ill. (WCIA) — Two years ago, a couple in Rantoul welcomed their son Ezra. Approximately eight months later, they began noticing that he was experiencing developmental delays and discovered that a rare disease was the cause.
Ashley Thornton and Connor Rosenbeck identified the condition as GM1, a genetic disorder affecting mainly children, which results in progressive neurological decline and significantly shortened life expectancy. It’s estimated that fewer than 5,000 people nationwide are diagnosed with GM1, and currently, there is no cure.
For Ezra, this means he is developmentally behind compared to other children his age. He faces challenges with activities like walking and crawling and requires feeding through a tube directly to his stomach.
Despite the diagnosis, Thornton and Rosenbeck are doing all they can to support him. At times, they’ve felt alone on this journey, which is why Friday — International GM1 Awareness Day — means so much to them.
“Everyone that has children and/or family members that are affected by this, we all just rally to one another and try to be there and answer any questions amongst one another,” Rosenbeck said. “We all should feel strong with each other and we should all know that as little a number as this is, we all are fighting the same battle.”
They also want to encourage people to get genetic testing before having a child to see if there’s a chance they will pass down one of these rare diseases.
There are also two fundraisers coming up to help raise money for Ezra’s care. One on June 28 and the other on July 19. The June event will start at 2 p.m. at VFW Post 6289 in Gibson City. July’s event will be held at noon at Millie’s Bar in Mahomet.
