The Heart and Soul Family: 2008 Heart Walk

Thursday, March 13, 2008

2008 Heart Walk

I know some of you already received this in an email but for those who didn't please read below.

Hello Everyone,

I wanted to let you all know that our family is participating in this years Heart Walk, which is held on May 3rd. I have been contacted by the American Heart Association to speak at the event. We are walking in honor of Arianna and all our family members who have battled heart disease. If you are interested in joining our team and walking with us you can click on the link below to join. The team name is Mended Little Hearts, which is the name of the support group I'm coordinating. This is a great opportunity to spread the word.

http://heartwalk.kintera.org/tucsonaz/mendedlittlehearts

We are collecting donations for the American Heart Associations if you would like to contribute. The minimum the AHA website accepts is $25, so if you want to contribute less you can send your donation directly to me. Please do not feel obligated to do either, we already appreciate the support we have recieved from you all.

Thank you,

Vanessa, Robert & Arianna

1 comment:

The Portas said...: Good for you guys! I think it's so important to support these types of events. It's fun to get involved, too. Have fun!; March 13, 2008 at 12:46 PM

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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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Thursday, March 13, 2008

2008 Heart Walk

1 comment: