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Posted by Jo Wilson
on October 29, 2009, 12:42:44, in reply to "Acquired teenage heart conditions"
86.155.194.184
Hi Frances,
I should imagine what you have been through, or are currently going through, must be, in some ways, an even bigger shock than when a baby is diagnosed antenatally or shortly after birth. As you said, for 15 years you had a healthy son, and for that to suddenly change must be life-shattering!
You really are not alone, there are other families out there who's child or teenager has suddenly fallen ill and been diagnosed with a heart condition, and all the support groups are beginning (albeit perhaps a bit on the late side) that these families do need support too.
I will contact Jessica who looks after our membership database and ask her if she can think of anyone who might be relevant for you to speak to, and also to Alex Bicknell who runs our ETC (ECHO Teen Club) group. I'll ask them to reply via this message board, but they can access your email address from it. The Children's Heart Federation also are a really good source of alternative support and information, so might I suggest that you get in contact with them on their helpline number : 0808 808 5000. Also, why not suggest that your son registers for the ETC message board (www.echo-teen-club.org.uk) as he might be able to get to know some of the other young people who have heart conditions in that way.
One last thing - if he's being treated at the Evelina (which I assume he is, as you've found ECHO), then the hospital run Transition Information Days for young people with heart conditions, once every six months (the next one's at the end of February 2010). They are held on a Saturday and are invaluable for parents and teenagers alike and also give the young people the opportunity to meet up with others in a similar situation to themselves. If you'd be interested in attending, please let me know and I'll organise a place for you and your son.
I hope that's helped a little,
Best wishes,
JO
Chief Executive
ECHO
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