Re: genes

[Guest guest]

Dear Betty,

I so much wish that I could have been there right now, if nothing

else, so just to be able to give you a long hug... I will not pretend

to be able to understand how you feel right now, because I think

nobody can do that without having been there themself... I wish I

would be able to tell you something that would give you at least a

little comfort right now, but words really are " poor " when something

like this happens... And you have had to deal with so much pain and

grief the past 10 months... Nobody, especially no mother, should have

to go through what you have had to go through this past year. VEDS

really sucks, big time... It is just ruthless... I guess that right

now you just got to work through these feelings, even if you,

somewhere in you - deep down, know that it is not your fault. There

is no way you could have known that you have this disorder. No way

whatsoever... And I hope that you at some point can come to term with

just that, that this was something that was completely out of your

control...

It is awful how this keeps on happening to people with VEDS, nobody

knows anything until something fatal suddenly happens to one of their

children, who's life the doctors aren't able to save. Then afterwards

they find out what caused it, and that either one of the parents also

has it or the child had a gene mutation causing it. But no matter how

it happened, there is no way anybody in the families could have

known... Hopefully, some time in the future, they find a way of

recognizing VEDS in children, hopefully just after they are born. But

that is not a possibility today, it is very rare that a child gets a

EDS diagnosis at birth.

Had you known, you could have made a choice as to have or not have

children. But as long as you did not know, you had no way of making

that choice. It was awful how your son was not allowed to live for

long. There is just no meaning in that at all. There is just no

meaning in kids dying, leaving their family behind. But I am sure

about one thing. If you had been able to ask your son if he would

have chosen to live even if it was a short life, chances are high

that he would have said " yes " . Because even if you just had him " on

loan for a short time " , he was able to live a life worth living and

give you all a lot. And that for sure means a whole lot!!! And he

will be with you always even if he isn't here in the flesh now...

I so much wish that you could have made it to Buffalo this summer,

especially meeting the other " VEDS moms " , would have been so good for

you. They are all fantastic human beings who I feel so privileged to

have been able to get to know... I truly believe that it can make

such a difference in your life, but maybe next year?

Sending lots of warm thoughts your way...

Lots of gentle cyber-hugs,

Aase Marit

>Hi all

>Well yesterday was the second worst day of my life (the first being

>the death of our son 10 months ago). The results have finally come

>back from Seattle and definitely my son was positive for VEDS as I

>am, so of course that means that I had passed this terrible gene to

>him and it was I who have torn this family apart and it was I who

>ripped apart all our hopes & dreams. When I heard this news I

>wanted to die along with my boy How can I live with myself knowing

>this came from me. Whyu oh why did this happen??? I started to

>rebuild my faith after Danny died and now it shot to hell again I

>pray to God fro help and all I get is more grief and now something

>shows up on my CT of my brain which I then have to have an MRI which

>I'll find the results oin Thursday rightnow I hope there is

>something. How much more can I take??

>Betty

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