Alex Hoover, just 14 years old, has struggled his whole life, and now his mother lost her fight for him to live normally—and die peacefully.
Born with a congenital heart defect known as “aortic mitral stenosis,” Alex, who lives in Athens, Ala., had to be revived from death the moment he was born, and faces imminent heart failure. He was also diagnosed with autism.
Rene Hoover, Alex’s mom, requested in October that the Limestone County School Board grant her “prayer” to honor Alex’s “do not resuscitate” advance directive should his heart fail at school, which he attended four hours a week. Because of his autism, the routine of familiar faces is comforting to Alex, but if he were to begin to pass away there, life saving measures would simply prolong his suffering without offering long term hope, the Daily News reported Tuesday.
“However, they won’t follow this advanced directive,” Hoover said about the school. “So it put me in a position where I’m having to fight for my son’s rights, which I think is human rights, that we have made this decision for him. But they won’t follow them.”
Republican state Rep. Mac McCutcheon got involved when he found out that advance directives don’t cover minors. He is considering introducing legislation to close that loophole.
School officials cited liability concerns and the impact on other students and teachers as their reasons.
But none of that helps Alex, who has not returned to class for fear that he would have to suffer another resuscitation.
“He would have to live his fears every single day,” she said.
For this young teenager, there’s little hope left that he can live normally and die peacefully, until the grownups can agree, and that’s both sad and tragic.
Watch the video, courtesy of WHNT-TV, below.