Alex Hoover has lived through a lot in his 14 years.
The Athens, Alabama, teen, lives with critical aortic stenosis, a heart condition caused by the narrowing of the aortic valve, which obstructs blood flow to the rest of the body. His condition has affected him his entire life – he was born on the brink of heart failure.
Despite his medical hurdles, Alex, who also has autism, has been able to live a relatively normal life, attending his local high school up until last year.
In recent months, Alex’s health has begun to decline. Doctors told his mother, Rene Hoover, that if the worst comes – Alex goes into cardiac arrest and his heart stops beating.
“His entire life would be medications and surgeries,” Rene told the Associated Press. “He would have no quality of life.”
His deteriorating quality of life coupled with Alex’s paralyzing fear of hospitals and medical procedures led Rene to decide to have a legal advance medical directive written up for her son, which includes a do-not-resuscitate order.
The decision wasn’t an easy one, Rene says, but was one they were forced to make due to the stark reality of his condition.
“It is a conversation that we’ve had to sit down and multiple times address, because that is the reality of his condition,” Rene tells PEOPLE. “It’s not been a question of if, it’s more when.”
However, in Alex’s home state of Alabama, there is no policy in place when it comes to following do-not-resuscitate orders for those under the age of 19.
“There’s no policy, there’s no law,” Rene says. “There’s nothing on the books. Alex is literally the first.”
Because of this legal hole, his school district will not follow the directive’s do-not-resuscitate” orders, and will instead rely on their own policy – where they’ll do everything possible to save Alex’s life.
Rene longs for Alex to be able to live with a sense of normalcy for the rest of his life. For the Hoover family, that includes Alex being able to go to school, see his friends and interact with his teachers.
“We want to be able to get him to a place where he feels good and is able to do certain thing where he enjoys doing,” Rene tells PEOPLE. “It’s important for him to be able to maintain as much of his normal life.”
Rene says she’s asked the school for Alex to be able to return for as little as four hours a week, with Rene waiting in the parking lot outside, but still has been refused due to the lack of policies in place to protect minors with do-not-resuscitate orders.
“Families should have a voice,” Rene says. “How is this fair to him? How is this beneficial to him?”
The family is working with Alabama State Representative Mac McCutcheon to push for legislation that would put a policy in place for minors. In the meantime, the school is working to find a solution that will allow Alex to return.
“He’s a great kid and we really love him,” Tara Bachus, the director of special education for the Limestone County School District, said. “We’re working really hard with lots of different people to try and come up with good options for him to participate and be taken care of.”
But until the school is able to honor his family’s wishes, Alex will not return.
“He misses school,” Rene said. “He misses his teachers, he misses his friends. For him not to be able to go to school and finish out the last days that he has, it breaks my heart.”