Cone Procedure

03/06/10

Hi all,
My daughter, Katie, a twin, was diagnosed at birth with EA. She is compensating well without meds but we have always known she would need surgery. The plan being, as with most, wait until she isn’t coping, as close to adult size heart as we can get, and then go in for repair/replacement.  Like all of you, I hit the info highway as hard as I could and have been stopping in for updates for the past 6 years. Two years ago, there was a post about the cone procedure….and the research I did following that made my heart skip…really!….a procedure that has such incredible success rates is truly more than we were ever allowed to hope fore.  So, began the long process of trying to change minds….what if we just sent her stuff to Dearani and the Mayo, just to see if she is a candidate.  Fine, our cardiologist did so, but our surgeon is reluctant.  Mayo says yes, she is a candidate.  So mom says, “We’re going”.  Cardiologist says just wait, lets talk to the surgeon and see what we can come up with.  Dr. Ross, our surgeon from Stollery in Alberta Canada decided that this was a good procedure and western Canada should learn it so would we be willing to have Katie operated on with Dr. Ross assisting Dearani in Edmonton.  Sure, whatever, just get it done.  Now Dr. Dearani has not responded to repeated requests for contact but a Dr. del Nido from Boston has agreed to do Katie’s procedure in Boston.  I have done a lot of research on Dearani but can find less on Dr. del Nido and his results.   Does anyone out there have some information on Harvard and/or del Nido’s publications/results.

Thanks, Alison in Canada

Fundraising for Ebsteins AnomalySummer’s here and it’s time to take advantage of the weather to raise some funds.  This is exactly what one of our members, Katy Turner, is doing in her local city of Bath.

Katy’s daughter Emmeline is three and was diagnosed with Ebsteins at birth. Since then Katy and her husband Ed have joined the Ebsteins Society and are now organising our first summer fundraising event in 2010 – a sponsored pram push in Victoria Park in Bath.

We would love you to support this event either by coming along or sponsoring Katy (click for details), or perhaps you could organise you own event! – see our fundraising page for ideas.  Of course, we always welcome direct donations to The Ebsteins Society!

3 legged race

14/06/10

In coordination with the Katy Turner pram push fundraiser, we’re running a three-legged race around the same course in Bath’s Victoria Park.  Here’s a fantastic chance to get your kids involved in the fundraising – they can ask their friends to sponsor them and take part in their own fun activity.

If you can get along to the event on 11th July then please come and support us.  If not, why not organise your own event instead!

 

We would really like some more people to sign up for our sponsored event in a couple of weeks time, so if you’d like to come along to Royal Victoria Park on Sun 11th July please email me at katy ‘dot’ turner ‘at’ ymail ‘dot’ com or feel free to just come along and support and buy some lovely cakes, jewellery and books.

Thank you

Katy, Ed and Emmeline

UPDATE: See press coverage of the event.