(FOX NEWS) - Last summer, Carter Brischler was doing flips off his grandfather’s boat and looking forward to starting school in the fall. But just eight months later, the 5-year-old daredevil spends his days in and out of the hospital, unable to see, hear, eat, speak or even move on his own— his little body ravaged by a rare disease that is rapidly attacking his brain.
His family has been on a mission to give him as many memorable experiences as they can before he loses more.
“It's not like he's living, you know? He's here, and we love him, and we're doing everything we can. But, you know, this isn't life,” his mother, Stacie, told FoxNews.com.
Carter is one of an estimated 13,600 people in United States believed to be suffering from adrenoleukodystrophy, or ALD, a rare genetic disorder that prevents the body from breaking down very long-chain fatty acids (VLCFA) in the brain. The accumulation of these VLCFAs causes the myelin sheath— the insulating membrane that surrounds nerve cells in the brain— to deteriorate. Without that sheath, messages from the brain to the rest of the body, and vice-versa, can’t be delivered.
“Everything's been taken away from him that he can use to enjoy life,” added Carter’s father, George. “He can't move around or go where he wants to go, or play with what he wants to play with. He can't see; he doesn't know if it's day or night. It's an awful thing to have to watch him go through.”