Wednesday, October 29, 2008

Hello.

I am back.

I am just sitting here, thinking about medical equipment.

You know, I keep thinking about Tay-Sachs disease.

I mean, there was an article I read in January, that really broke my heart.

Its about this little boy named Evan who was born with Tay-Sachs disease, and they didn't know it until he was about six months of age.

They had genetic testing, to see if the parents were carriers of the Tay-Sachs Gene, but they were told they were NOT.

A Mistake is telling someone they have the flu when they have a minor cold.

A mistake can't even begin to describe the destruction they caused Evan's family.

The article name, "They said the baby was fine. He wasn't."

If you would like, feel free to check it out, but I highly recomment you don't, because Its so sad.

Every sence I read it, there is this coding of sadness that I have felt.

The winter seemed to make it worse.

When the spring began, it seemed to die down, but i still feel for Evan's family.

I mean, picture this.

You had a baby boy.

He appeared normal, until about six months.

You noticed that he started falling behind.

He wouldn't sit up, he wouldn't even roll over.

You saw cherry red spots on his eyes.

You take him to the Dr.

Doctor?

What is wrong with my baby?

He does testing, and finds out that your baby has Tay-Sachs disease.

You are devistated with the news.

Well, you say to yourself, I was told we were not carriers of the Tay-Sachs ghene.

Well, you call the Dr. That tested you all, and he calls back, and said, "Oops. You and your husband are carriers."

That is worse than a Mistake.

THAT IS WHAT NO FAMILY NO MATTER HOW MEAN THEY ARE TO YOU, OR ANYONE SHOULD HAVE TO GO THROUGH.

I mean, that would be absolutely DEVISTATING.

I hate it when I hear that a child has Tay-Sachs or Sandhoff disease which is similar to Tay-Sachs only HEXB is missing.

In Tay-Sachs HEXA is missing.


Sandhoff disease is ALWAYS fatal too.

Now there are three forms of Tay-Sachs.

Classical infantile, which is what we are talking about, Juvenile Onset which is where some of the enzyme HEXA is present, but not enough, and it is usually fatal between the ages of 10-15 years of age, and LATE ONSET TAY-SACHS DISEASE.

Most of the enzyme is present, but not all of it.

This usually appears in the late teens, early adulthook, and usually is NOT fatal.

Well, God bless, and i will talk to you again.

Have a beautiful day.

Lots of Lovefrom Peter Johann

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