Monday, July 28, 2008

A Paris Trousseau collection of bruises

Over the past few weeks, quite a number of my readers have commented on my bruises (I love referring to 'my readers', its so groovy!!). Yes its true, I am always covered in bruises and bumps and scratches. But it is not just because I have not quite mastered the art of walking. Let me tell you a little about Jacobsens Syndrome.

As you can see, I am very, very, very beautiful (I know, it gets boring after a while, all this admiration and stuff …. ) I am beautiful because I have very special, tailor-made genes. We all are made of chromosomes, and when Mama and Papa made me, part of one of my chromosomes fell off, when the cells started dividing. They were in Spain at the time, so maybe next week I'll stumble across my lost bit of chromosome!!!

Well, that lost bit of chromosome 11 creates a bleeding disorder called “Paris Trousseau Syndrome” which causes an impairment of platelets' normal blood clotting function. Its kind of like a form of hemophilia, and us guys bleed quite a lot. We are sensitive to pressure on our skin... such as walking into the kitchen table (something I do often because I keep taking my glasses off). Some of you have admired the artwork on my forehead which can be compared to a Salvador Dali mosaic of blues, purples and magentas. I found out about my Paris Trousseau because I had a bone marrow marrow biopsy when I was born. It explained my dangerously low platelet count and was the reason I was sent to the Hemotology departement of the childrens hospital just after I was born, where I had blood transfusions to top up my platelets level. It’s a good thing I’m so brave (and cute), that’s what I say! So you see, us Jacobsens kids bruise very easily, bleed copiously when we cut ourselves and tend to be at risk of internal bleeding all the time. I think this is why Mama is so protective of me and follows me around like a leach! We can’t take common medicines that interfere with platelet function, like ibuprofen, cos they do funny stuff to my blood which isn’t good (Mama understands better than I do)

So, since we are on the subject of Jacobsens Syndrome, let me introduce you to some of my fellow Princesses who also have Jacobsens Syndrome. You will note that it is a principally ‘girls’ thing but we do have one gorgeous Prince called Dylan. You will probably notice that we have features in common, and that we are ALL exceptionally good looking and cute!

Here is my gorgeous friend Charlotte who lives in France too. She is fantastic. Her Mama was the first person to contact us, via Internet, when Mama found out about Jacobsens Syndrome. Stef, on t'adore! Et puis il etait temps de se retrouver, tu ne crois pas?

Eva also lives in France, and her Mama Sylvie calls her a whirlwind cos she is so full of life. I met Charlotte and Eva last summer when they all came to our village for a weekend. It was a wonderful moment meeting them both! We hope to do it again soon.

Now this little cutie here

is called Isabelle, or Isy. She was born in England but her parents have just whisked her off to Singapore where she is getting much better medical care. Our Mama's talk quite a lot over the phone, but have never met (YET!).

Isy has yet to learn some social graces when it comes to table manners
This here is our Prince, Dylan, who lives in far-away AUSTRALIA! His Mama and mine exchange emails occasionally, and his Mama has just started up a blog. This is Dylan at the recent Jacobsens Syndrome conference which took place in the US - he sent me this picture with Po cos he knows I am nuts about the Teletubbies. Isn't that nice?!!!

This here is gorgeous little Sydney who lives in the US .... Mama has always been gobsmacked at how alike she and I look. She is very cute, don't you think???

Now this here is my gorgeous new friend Johanna who lives in Sweden. Mama met her Mama over Internet just a few days ago. Johanna is four months old and a right little cutie, don't you think?

And this is another little girl with Jacobsens Syndrome who lives in the US

We are definitely a good looking crew, if I may say so myself, in all modesty!


Amber said...

You are so very gracious to accomodate all of us with this makes my mama look cranky, she tires of explaining things to people! (don't tell her I told you!) ;^)

Isabelle said...

What a great looking bunch! I hope we all get to meet up one day....big hugs to

Bird said...

Isn't the internet amazing? Without it you never would have found this amazing collection of beautiful children.

HeatherS said...

Hello Sweet Girl-

Thank you for the bruising explanation and yes, you are gorgeous! Take care of yourself and be nice to your mama!

Sams Mom

mommytoalot said...

A lovely bunch of children.
Thanks for explaining your syndrome