My son Joseph

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Sunday 3 June 2001 2.11pm
Hi - we live on the Southbank, and my son's in Guy's, so I'm cheekily hoping you might forward this to some of your list? Thanks.

My son Joseph is dying from a rare condition, and I'm hoping someone out there knows someone who might help. Do you know anyone who's doing any research regarding treatment of thrombosis in the central veins? (SVC obstruction)

Joseph was born with Absent Pulmonary Valve Syndrome, which causes massive compression of the lung structures as they grow in the womb. Now 11 months, he has been on a ventilator since birth and has suffered many operations and procedures. We've nearly lost him many times, but each time he's pulled through. Thanks to innovative surgery at Guy's Hospital at London Bridge his lungs are now in much better shape, and my wife and I were looking forward to getting him home soon.

However, some months ago his Superior Vena Cava (the main vein that drains the chest, arms and head) became blocked, probably because he's had myriad IV lines in him since birth (clots can form around these lines). The body tries to compensate by re-routing blood via smaller veins, but now in Joseph's case this process is failing as more and more smaller vessels get blocked.

The result is that his upper body periodically becomes grossly distended, and is currently being managed with diuretics and fluid intake reduction. Warfarin (orally - previously Heparin sub-cut) is being used to try and slow progress of the clotting. Joseph will die when the process can no longer be controlled, or when part of the clot breaks off and lodges in the lungs.

Can you help? Perhaps someone you know knows someone in medicine who's heard of someone doing research in this field? Can you forward this to anyone who might help? We know that there's some research involving the use of lasers to re-open the major veins, but maybe there's a healthcare professional out there somewhere in the world who knows of something else?

I get hundreds of junk emails every week, but I hope you feel this one is worth forwarding on. I also know that Joseph's just one of hundreds of babies that die every day from preventable causes.

If you forward this message, please leave in the whole body of text so that anyone with information can contact me. Thanks to the Zentext team at CID for setting up an area (<a href=""></a>) for collating information and news. Please use it, or contact me directly, if you can help. There's also a copy of this email there in case the one you get is corrupt, has been altered, or has too many >>>> marks in it. Please do not forward this message if you receive it after the end of 2001.

Thank you in advance, and sorry for troubling you with unsolicited mail. It seems so unfair that he's been through so much, endured so much pain, and nearly got his shot at a fairly normal life only to be unlucky enough to fall victim to an entirely unrelated and rare condition. I need to know I've done my best for him, and this is the best I could think of. I daren't hope it'll get a result, but maybe Joseph's due just one lucky break. People sometimes talk about six degrees of separation - where everyone is separated from everyone else on the planet by just six people. I'm hoping that you will be one of the people in the chain that joins me with the person who can help Joseph.

Regards, Michael & Thelma Decker
Monday 4 June 2001 4.34pm
Sorry to know for what have happened to your son.
But do you think it will be more effective for you to pass the message through the message boards/support groups etc. of the various medical sites, just to name a few, like
with regards & wish you the best of luck
Sunday 10 June 2001 8.10pm
Just to say how sorry I was to read your e-mail. Three years ago my three month old baby was in Guys failing to put on any weight, whilst we dealt with one depressing diagnosis after another. We were lucky, her condition proved treatable, and she is fine. But to look back on that depressing cycle of worry, clinics and hospitals still gives me the shakes. Good luck.
Monday 9 July 2001 11.14pm
I received this message from Michael Decker over the weekend:

You might remember replying to an email my wife and I sent round a few weeks ago. Joseph died last evening at 7pm. It was quick, merciful, and he felt no pain.

We all cheered him on during his short life, and he had the best possible shot at getting better. He cheated the odds time after time, but yesterday the odds ran out. We're not sure yet exactly why he died - he hasn't been very well lately but nothing that any of us considered immediately life-threatening. It was so quick that we think it might have been a pulmonary embolism, where part of the clot breaks off and lodges somewhere critical.

Thelma and I and her mother and brother were there when it happened, which we're glad about. We bathed and cuddled and held him for the next few hours, and then my parents arrived and I carried him down to the mortuary with two of his favourite nurses.

We were very glad to receive useful advice, support and some extremely useful suggestions from all of you. We passed several of these on to his consultants, who found them very useful and resulted in widening their knowledge in this area. It also helped Thelma and I to know that we were doing what little we could to help.

We've written a final message at Joseph's site at

Thank you again.

Michael & Thelma Decker

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