Kieran Lyon, 19, was found unconscious in his bed at his home last month after complaining the previous night of feeling unwell.
Paramedics arrived at his home in Dalry, Ayrshire, but after 20 minutes he was pronounced dead.
He suffered a fatal seizure known as Sudden Unexpected Death in Epilepsy (SUDEP), where a person with epilepsy dies suddenly and prematurely and no other cause of death is found.
His parents Tracy and David said Kieran had always lived life to the full despite being diagnosed with epilepsy when he was 14. They called on the families of people with epilepsy to ensure precautions are taken to keep them safe.
His father David, 56, said: “Kieran was the life and soul of the party, he was always happy and was never down. He would worry more for other people than he would worry for himself.”
He added: “I think he had an epilepsy that the doctors simply didn’t understand.
“SUDEP seems to only happen to young people and they are nearly all found in their beds but there is not enough being done about it.
“Doctors have said they don’t know if the brain tells the body to shut down, but they are left sitting peacefully after it happens. If we can do anything in his name to save other people then we will do it.”
College student Kieran, who leaves behind brothers Chris, 26, Garry, 24, and Cameron, 15, was heavily involved in looking after the family’s 20 horses. He also helped rescue mistreated animals, and had spent time in the Army cadets.
His mother Tracy, 50, said: “There is a stigma over epilepsy that needs to change to help more people. It’s a killer and people can develop epilepsy at any time and it can kill you.”
Each year in the UK, there are an estimated 600 cases of SUDEP.