COHASSET (CBS) — A Cohasset family is launching an on-line campaign hoping to raise awareness and research money for rare diseases.
Eight-year-old Bobby Allen suffers from a genetic disorder called Glut1 DS. It stops glucose from getting to the brain and can cause seizure and other disabilities. So Allen has to eat a special diet and be monitored regularly by doctors.
“I can’t eat cake. I can’t eat cupcakes. I can’t eat any carbs or sugar,” he explains.
Bobby’s mother Michele teamed up with a friend to start a charity to help raise money for Glut1 research.
“The experts have determined Glut1 is curable,” she said. “It’s just a matter of getting the proper funding and going to the next level to find a proper cure.”
The Allens and other families are holding a special event at the statehouse Monday, February 28 to help highlight rare diseases like Bobby’s.