Soleflor Mom » Devastating news for my neighbor

Parenting, Saving and Going Green

By TwitterButtons.com

Home » Friends, Neighbors, Health

Devastating news for my neighbor – 9 Years old

16 January 2008 8 Comments

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.

Random Posts

8 Comments »

Karen said:

That is so sad.

Karen’s last blog post..Eat Healthy Foods

# 16 January 2008 at 12:53

Jules said:

Oh that is so devastating! I can’t imagine how they must feel

Jules’s last blog post..My Internet Life

# 16 January 2008 at 4:21

Laura (author) said:

Her husband, who has been quiet since the first diagnostic, yesterday at night went nuts and we could hear the shouts and screams through the walls of the house. He just didn’t want to believe that his son could die and wanted to slap everyone in the house, it was really scared. Today he was not talking to anyone, he’s in shock, his wife is trying to stay calm and although crying a lot she’s thinking about the kids and hold on.
They are going tomorrow to make genetic exams.

# 16 January 2008 at 9:14

cheerfulday said:

ooo.. sad case for only 9 years old.. sigh… Hope God can help..

# 17 January 2008 at 3:28

Connie said:

How very sad. I pray that they find help to cope, a more caring doctor and treatment for this young boy.

Connie’s last blog post..National Birth Defects Prevention Month

# 18 January 2008 at 5:45

Laura (author) said:

cheerfulday . If doctor’s can’t…I guess no one can. He’s young and I believe medication is going to work and although with some limitations he can go on with his life.

# 18 January 2008 at 8:54

Laura (author) said:

Connie . When we less expect these things happen. The genetic department is now taking care of his case and they are already checking his genetic code to see how severe his syndrome is once there are several variants.

# 18 January 2008 at 9:03

Laura’s Daily Life: » Blog Archive » Saturday…happenings said:

[...] daughter is attending as well as a neighbor girl that came with me. My son stayed at home with my neighbor boy that has the syndrome and wasn’t able to attend this party. This party is being held in a activity center that is not [...]

# 20 January 2008 at 2:00