The Heart and Soul Family: News clip!

Wednesday, May 20, 2009

News clip!

5 comments:

Kathy said...: good job mama!!!

You're helping SO many people...I wish I was there to give you a big HUG!!!; May 20, 2009 at 9:12 PM
SUE AND SHAY said...: TOO cool Vanessa!!!!

Thank you for getting the word out to other families. You are amazing!!; May 21, 2009 at 11:51 AM
Amyacl said...: So glad that your hard work is attracting the attention it deserves! Great job!; May 21, 2009 at 12:48 PM
The Portas said...: I saw this over on Facebook. This is awesome!! YOU are awesome! xo; May 21, 2009 at 1:47 PM
Anderson Family said...: You've done so much to get it out there. And 2 adorable poster children sure help!; May 30, 2009 at 1:12 PM

Arianna Marie

Arianna was born on 11/26/06. 4 weeks premature, and weighing 4lbs 13ozs. She was born with a congenital heart defect called Tetralogy of Fallot, which is actually 4 heart defects, and was later diagnosed with an ASD. She had open-heart surgery on 5/22/06. Her surgery was to patch the VSD, patch the ASD, widen her pulmonary artery, and attempt to fix her pulmonary valve. They created a man-made pulmonary valve out of myocardium to avoid a conduit placement, which would require multiple surgeries. On September 21st, 2012 we got the news that Arianna's right ventricle pressures are too high and she needs a pulmonary valve placed. When we meet with the surgeon we found out she also has pulmonary branch stenosis and a possible defect in her tricuspid valve. He will be addressing all of these issues at the time of surgery. On October 18th, 2012, Arianna had her 2nd open-heart surgery.

At 5 weeks old she was diagnosed with a genetic disorder called 22q11.2 Deletion Syndrome, which is caused by a deletion of a small segment of the long arm of chromosome 22. This disorder has many names such as 22q Deletion syndrome, Velo-Cardio-Facial syndrome, DiGeorge syndrome, Shprintzen syndrome, and Catch 22. So far there has been more than 180 anomalies reported in this syndrome, which is highly variable from person to person and no individual has all of the anomalies. Arianna has overcome many obstacles and we find peace in knowing that God is working miracles in her life. We set this site up to share our family journey. We know that God has a special plan for Arianna and our family!

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Wednesday, May 20, 2009

News clip!

5 comments: