Whether it goes lub-dub, lub-dub or thumpity, thump, every heartbeat is a precious aspect of life that many people take for granted.

Freshman Alex Esteves has a higher appreciation for his heart everyday and each beat it makes.

Esteves has Familial Cardiomyopathy, a tissue disorder of the heart muscle, as well as symptoms of Long QT syndrome, a disorder of the electrical heart system. An Automatic Internal Cardio Defibrillator (AICD) implant, a small circular device, acts to equalize his heart rate. “I don’t think about it much,” says Esteves. “Sometimes I may feel a little pain [in my chest] but normally I just ignore it.”

During a capture-the-flag game in third grade Esteves experienced his first cardiac arrest. “It just happened, I just collapsed,” says Esteves.

Long QT syndrome affects one in every 5000 people and may cause 3000 deaths in children and young adults every year in the United States. The defects in the heart’s electrical system cause long pauses between each heartbeat so that the heart must work hard to restart after each beat. If too much time passes his heart could stop.

The AICD is 99% effective and shocks the heart back into rhythm if it stops, or when heart rate is too high or low. As a result of his condition, Esteves cannot be especially physically active. Sports are off limits. Junior Nick Esteves, Alex’s brother says, “He can’t relate to the adrenaline rush of sports, but he doesn’t really seem to care that much.”

Esteves looks to video games, card games and reading instead. Magic the Gathering and War Hammer 40,000 are his favorite games. He also plays the clarinet in the marching band.

Says School Nurse Janeane Marks, “I’m glad Alex thinks it’s not a big deal and he’s living with it and doing very well, but it is a serious condition.”

He has not suffered a cardiac arrest since 1999, but his AICD has malfunctioned and shocked him unnecessarily, and as a result he underwent four operations in five years. The device shocks at various voltage rates. The low shocks are1.5 to three volts and send jolts through his body, which may cause him to fall to the ground.

The high voltage shock throws him five feet forward. “It feels like being kicked in the back by a horse,” says Esteves.

If he ever has complications, Alex should not be touched. Any contact will shock the person touching him and could cause Alex to be shocked again. If you see him in distress, immediately call 911 and request for transport to Children’s Hospital in DC.

Esteves feels that he leads a normal life and hopes advances in technology will some day make it easier. Alex has had three different AICD implants and each has been smaller than the previous device. “Eventually I hope either that it won’t be necessary to have [an AICD] or it’ll just be so small that it won’t even matter.”