Death of Sister
05/10/10
My sister was born with epsteins, under went 2 heart surgeries, and on june 26, 2010, and the age of 25 she passed in her sleep from epsteins.
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My sister was born with epsteins, under went 2 heart surgeries, and on june 26, 2010, and the age of 25 she passed in her sleep from epsteins.
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My condolences to you and your family.
Comment by Stephen — November 14, 2010 @ 4:39 am
Have faith,, I am a 48 year old man with Ebstein’s. I know I am one of the oldest living with this condition. I pray your children has enough strength to fight. I have lived with this my whole life as you can imagine. From my experience,, dont hold your child back let them do everthing they want to. I have defied doctors my whole life. I played soccer, ran track, played football… everything and anything to defiy the doctors… I have been told I would die by 7. Then I was told I wouldnt make 18, i had surgery at 21, they gave me 7 years, I had surgery again at 40 they gave me 2 years. As I have said I am now 48!! Still kicking and defying the doctors. A defieant atatude and fighting to live my life everyday has kept me alive. I have 2 wonder children and 2 wonderful grandchildren. None of them have the condistion.
I hope the best for you and your children…
you can contact me at cosmoswriter@hotmail.com If you would like to talk
Comment by cosmoswriter — December 20, 2010 @ 2:49 am
Hi there
And thanks for posting your upbeat comment. I would just like to clarify the point about your age as I don’t want people thinking that 48 is old for an Ebstein’s patient. We have many members over 48, including one who is 71, so there is even more scope for optimism than you suggest.
Caroline
Comment by caroline — December 20, 2010 @ 9:45 am
Hello, I am a 24 year old female who has had two tricuspid heart valve replacements. One when I was 18 months old, my second when I was 18. I’m doing great and have two beautiful daughters age 3 and 1 year and a half.
Comment by Miranda — March 14, 2011 @ 4:24 am