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	<title>Ebsteins Anomaly</title>
	<link>http://www.ebsteins.org</link>
	<description>together we&#039;ll be better</description>
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		<title>Fundraising in the Park</title>
		<description><![CDATA[Thanks to all those who were involved in our pram push in the park.  We raised over £1300 which was great! See http://www.thisisbath.co.uk/news/Mum-bids-raise-funding-training/article-2415655-detail/article.html for the write up.]]></description>
		<link>http://www.ebsteins.org/?p=1285</link>
			</item>
	<item>
		<title>Mum wants more research</title>
		<description><![CDATA[I am a first time Mum, and we were told our baby girl had Ebsteins the day before she was born.  Although we actually had had an abnormal NT at 12 weeks, and went ahead with an amnio which was normal.  We proceeded with a detailed u/s and echo at 20 weeks and were told that our baby was [...]]]></description>
		<link>http://www.ebsteins.org/?p=1281</link>
			</item>
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		<title>Help for Rino</title>
		<description><![CDATA[Hi, My name is Emma and I have a small school on the island of Koh Samui in Thailand.  One of my students, a little boy called Rino, has just been (after literally years of doctors telling his family he would grow out of it) diagnosed with Ebsteins.  He saw a specialist in Bangkok who [...]]]></description>
		<link>http://www.ebsteins.org/?p=1264</link>
			</item>
	<item>
		<title>Pram push in the Park 11th July 2010</title>
		<description><![CDATA[We would really like some more people to sign up for our sponsored event in a couple of weeks time, so if you&#8217;d like to come along to Royal Victoria Park on Sun 11th July please email me at katy &#8216;dot&#8217; turner &#8216;at&#8217; ymail &#8216;dot&#8217; com or feel free to just come along and support [...]]]></description>
		<link>http://www.ebsteins.org/?p=1262</link>
			</item>
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		<title>3 legged race</title>
		<description><![CDATA[In coordination with the Katy Turner pram push fundraiser, we&#8217;re running a three-legged race around the same course in Bath&#8217;s Victoria Park.  Here&#8217;s a fantastic chance to get your kids involved in the fundraising &#8211; they can ask their friends to sponsor them and take part in their own fun activity. If you can get [...]]]></description>
		<link>http://www.ebsteins.org/?p=1245</link>
			</item>
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		<title>1st Summer fundraiser</title>
		<description><![CDATA[Summer&#8217;s here and it&#8217;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&#8217;s daughter Emmeline is three and was diagnosed with Ebsteins at birth. Since then Katy and her husband Ed have joined the [...]]]></description>
		<link>http://www.ebsteins.org/?p=1229</link>
			</item>
	<item>
		<title>Cone Procedure</title>
		<description><![CDATA[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&#8217;t coping, as close to adult size heart as we can get, and then go in for repair/replacement.  [...]]]></description>
		<link>http://www.ebsteins.org/?p=1194</link>
			</item>
	<item>
		<title>My experiences as a mum</title>
		<description><![CDATA[[apologies - needed to shorten the long title - Ed] hi, I am the Mother of a child who was diagnosed with Ebsteins at Great Ormond Street 27 years ago. Hi, Nattikins here mother of 27 year old Laura who has Ebsteins, Wolff Parkinson, narrow pulmonary artery.  She was diagnosed at Great Ormond Street the [...]]]></description>
		<link>http://www.ebsteins.org/?p=1161</link>
			</item>
	<item>
		<title>Tia Elise&#8230; A life lost due to ignorance</title>
		<description><![CDATA[Tia Elise, Our second child was born 12 days overdue on 29th December 2004 after a textbook pregnancy. I remember so well the midwifes words after she was born &#8220;She&#8217;s perfect&#8221;. We thought so too &#38; her brother certainly did when he met her later that day. In the early hours of the morning, after [...]]]></description>
		<link>http://www.ebsteins.org/?p=1156</link>
			</item>
	<item>
		<title>Loss of our son, and looking ahead</title>
		<description><![CDATA[I lost my son Harrison on 04/02/2010 to EA. He was born sleeping, I was 27 weeks pregnant when he died. He was diagnosed at 21 weeks at Liverpool Womens Hospital (the staff there are fantastic).  Harrison had severe EA and pulmonary atresia and when he died his heart was so enlarged that it filled his chest. Losing [...]]]></description>
		<link>http://www.ebsteins.org/?p=1123</link>
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