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This fundraiser ended on 07/24/10

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Lorna's Birthday Benefit to help children with undiagnosed conditions, mystery diagnosis, unknown diagnosis and syndromes without a name. Event on July 10th includes Bisquick Pancake Nation Brunch and Wii Sports challenge

This Birthday Benefit is to celebrate Lorna's 14th birthday while raising funds for Syndromes Without A Name USA which is a non profit tax exempt organization. Funds raised will go to help children like Lorna who have no diagnosis for their many signs and symptoms, a syndrome without a name.
 

Lorna was born 4lbs 13oz at a full term birth. Along with having a low birth weight she also had microcephaly, meaning small brain. She also had very unique ears that are indicative of a genetic condition. A few months after her birth we found that she also had a hole in her heart, an atrial septal defect. This collection of signs and symptoms alone would point to some type of syndrome; however visit after visit with the doctors they couldn't determine what was behind all her conditions. Almost 14 years later we are no closer to knowing what affects her in so many different ways. Through all these years we learned of many other signs and symptoms that add to the mystery of Lorna. We have been involved in many research opportunities that often leave the doctors scratching their heads saying "she is a very unique case".
 

There are so many challenges with not knowing the diagnosis of a condition that affects someone and there are many different needs to address when helping the children and their families in these situations.
 

Please help Lorna and I help the children and their families!
 

 

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