I’m devastated. My neighbor was diagnosed with a very rare and dangerous syndrome.
He’s 9 years old and last summer he fainted twice almost dying in a swimming pool. He did a lot of exams and the doctor suspected of a syndrome (not that dangerous) but more tests had to be done to get a final conclusion. The results are devastating, he suffers from Long QT syndrome a rare syndrome that can cause death at any minute, specially during activities that require a extra effort from the heart or a stressful situation.
His parents are devastated, as you might imagine. They searched for a second opinion with a different doctor but the answer was the same, he has the Long QT syndrome.
The all family, the couple and the two kids (there is a 4 years old girl), are going to do genetic tests and the girl has to do extra tests to check if she also has the syndrome.
For now, he is forbidden to do any (of any kind) physical activity and is under medication for the heart. Well, tell a 9 years old to stay still, to not play soccer, to not run, to not jump…forever.
Although it’s none of my kids that is sick, I’m a mother, neighbor, friend and I didn’t want to “be in their skin”. Although I imagine, I really can’t feel the pain they are feeling.
One (among many others) think that is missing here regarding medical assistance is the psychological support to the family. The doctor says, there is the possibility of dying at any minute, keep the treatment, and that’s it. The family comes home without knowing how to handle the situation. If they want support…well they have to pay private doctors high prices for it.
