2018 Chicago

Norah's Supporters

Dear Friends & Family,

As many of you know our daughter/little sister Norah was born with multiple congenital heart defects. Medically her condition is defined as a hypoplastic left heart variant of double outlet right ventricle with normally related great vessels, mitral atresia, hypoplastic left ventricle and severe arch hypoplasia. In laymen's terms this means all of the structures on the left side of her heart are severely underdeveloped and/or nonexistent. Her condition is referred to as a "single ventricle" defect because she has one ventricle that has to perform the work of two.

While her condition is complex and serious, the current treatment option called staged reconstruction has come a long way in the last few decades and outcomes have improved greatly. Staged reconstruction consists of a series of three open heart surgeries that reconfigure the cardiovascular system to be as efficient as possible despite the lack of an adequate left ventricle. Norah endured the first of these surgeries called the "Norwood" at two days of age. She recovered from her first surgery quite well and our first hospital stay was only 19 days (typical post-Norwood stays average around a month or so). Her second surgery called the "Glenn" was performed at 4 months of age. She again recovered well and we were out of the hospital in 5 days. Her third surgery called the "Fontan" was performed this past July.  This hospital stay was for 10 days with a re-admission after 1 week for fluid in her lungs which resulted an additional 18 day stay.

In honor of Norah we've created the team Norah's Supporters that'll be participating in this year's Congenital Heart Walk. The Congenital Heart Walk is an ongoing national effort between the Adult Congenital Heart Association and The Children's Heart Foundation. The walk is designed to honor and remember the millions who have been impacted by Congenital Heart Disease (CHD). Funds raised will support the missions of both national nonprofit organizations who are uniting to fight CHD. We'd very much appreciate your support by either joining the team (please use the button on this page to join our team) or making a tax deductible donation!

Thanks,

Adam, Kim, Ethan & Kieran

(Norah thanks you too!)

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