The Heart and Soul Family: The Littlest Heroes Project

Tuesday, July 22, 2008

The Littlest Heroes Project

I just HAD to share this with you guys. This is an organization made up of professional photographers who will provide a free photo session of any child that has a serious illness. One of our TOF kids on the yahoo forum just had his session and his photos turned out amazing. I just put in an application for us and hope we can get someone to come out. There isn't a local photographer but one up in Phoenix who might be willing to travel, but not sure how far. It's crazy cause just this week I've been thinking about how the only professional pictures we have of Arianna are when she was a few months old and she has grown so much since then. We financially can't afford to go to a professional studio again but healthwise we can't afford to go to a local Wal-Mart for cheaper pictures. Then I find out about this organization and I'm almost in tears. So go to http://www.littlestheroesproject.org/ and fill out an application cause you know you want to! :)

3 comments:

Tina:0) said...: Hey Vanessa! Hope the session works out for you to have Arianna's pics done! I've had a link on Vaeh's blog for quite a while for this project. We haven't had it done for Vaeh yet - waiting on all the tubes to be gone!

Have fun having pics taken!; July 23, 2008 at 8:37 AM
Samantha said...: Thanks for sharing this site...I think I may apply for it too...we have not had any professional pictures taken either...what a great cause!!!

love,
samantha; July 23, 2008 at 4:30 PM
mina said...: Aaargh! I quit getting feeds from your site again, I've missed the last couple of posts! I checked out the photography site too, it's awesome! I hope you can find a photographer who will do your pics!

And it's awesome that Arianna is showing so much interest in the potty! Bilal pees on the potty 3 or 4 times a day, in the morning, after naps and before his bath, but he doesn't tell me when he needs to go. I am so ready for him to be out of diapers! I hope you succeed soon with Arianna.

I hope that you can take Arianna out more often now that you're venturing into the 'real world', and that she doesn't get sick. I know you must be pretty nervous about taking her places. Did she do fine after her MMR?; July 23, 2008 at 7:15 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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Tuesday, July 22, 2008

The Littlest Heroes Project

3 comments: