"It was probably the worst day of my life knowing he would not get to live his life out."
Carisa Holewinski is the mother of 7 month old Kuper who is one of only 16 children born every year in the US suffering from Tay-Sachs Disease.
She has started a Facebook campaign to raise awareness about the disease and says she had no idea she was a carrier.
Carisa says,"I didn't even know about this until they said there's a chance he may have it. I didn't know anything about it. I never knew anything about any sort of disease like this and I think people really need to be aware of their backgrounds and everything so that way if they think they can have it they can get you know tested before they even plan a pregnancy."
Experts say the disease can only be passed on when a child is born of parents who are both carriers. It is most common among those from certain ethnic backgrounds.
Carisa says, "French Canadian, Ashkenazi Jews, Dutch Amish, Cajun from Louisiana, those are the most common ethnic backgrounds it comes in and I'm French-Canadian but I had no idea until he was being tested."
Doctors say the main symptoms of the disease are a lack of hearing, sight and mental development. Having just been informed that a treatment or cure may be in the pipeline gives Carissa hope for 2013. But she feels all children, regardless of their disability just want be loved.
Carisa says, "Any children you see with a disability, don't look at them like they are strangers, they just want love and acceptance in this world."
