Little Fire Big Heart 2010: The event

The night was a whirlwind of beautiful cocktail dresses in various shades of red and dapper guys who clean up well. People mingled and munched on gourmet Italian meatballs provided by Vincenzo's and appetizers from O'Charley's too. They visited the auction tables and made their bids.

At dinner, we were serenaded with a wonderful performance by Patrick Henry Hughes - a young man who has been a guest on Good Morning America and The Today Show because of his inspiring story.

He was born without eyes and with deformed limbs but has persevered to become a well-known member of University of Louisville's marching band (with the help of his dad who pushed his wheelchair while he played), and a talented pianist, singer and author.

When the Hughes' family was featured on and episode of Extreme Home Makeover in February of 2008 during the time Aiden was in the NICU, I remember feeling so hopeful about Aiden's future after seeing how Patrick had not only overcome his challenges, but embraced them. I contacted him 2 years later about performing at Little Fire Big Heart and he readily volunteered.

Later guests watched a video that featured children and adults with craniofacial conditions. I created the piece to "put a face with a name", if you will, for some of the many conditions that affect individuals with craniofacial difference. I hope that hearing some of what they have gone through might make people realize what CCA says that "Beyond a Face is a Heart".

Then, the premier of "Aiden's Journey: Awareness and Hope" was shown. This short film documentary was created by Tommy Nolan of Creative Video Solutions and featured our family talking about the road we've been on since Aiden was born and we learned about his diagnosis of Apert Syndrome at birth. Tommy was our wedding videographer in 2005, and contacted me out of the blue after stumbling upon this blog and reading a bit about Aiden. He asked if he could do a piece that would help raise awareness and we jumped at the chance. What a perfect contribution to Little Fire Big Heart! Tommy and I worked together to come up with creative ways to raise money for this project, even applying for a grant with a major medical corporation. But Tommy was determined to make this film even if he had to pay for it out of his own pocket - which so far, he has done just that. He did not secure the grant but hopes to apply for more so that our goal of reproducing the final piece and distributing it to other families, medical professionals and schools can happen. Visit http://www.aidensjourneythefilm.com/ to learn more and see the trailer.

The film premier was followed by a wonderful presentation by the Guzzo family. Paula, a member of CCA's board of directors, and her husband Bob have two children, Scott and Aaron. Scott is another example of someone who not only defies odds but who's strength and zest for life can be matched by few. He was born with an extremely rare condition called Crane-Heise - so rare that he is known to be the only individual living with it in the world. And LIVE with it he does! Even though he is confined to a wheelchair, eats from a tube and has had more operations than his parents can keep track of, that doesn't hold Scott back. He has travelled near and far, met countless celebrities, and can Facebook with the best of them. His larger than life personality and spot-on sense of humor makes people take note - having a disability or a craniofacial difference does NOT mean you can't enjoy life! Paula and Bob's story is a beautiful one. It is full of hardships and many challenges of which I can relate while also providing much hope and strength for other parents of kids with craniofacial conditions. They have done something right in their journey with Scott and I hope to do the same!

Finally, auction winners were announced and the highly anticipated drawing for the raffle prizes began. We had 5 unbelievable packages:

~ A week's stay in a private Mexican villa and 100,000 airline miles (donated by Bill and Nancy Gorman and Ian McKenzie) - won by Matthew Rittmayer

~ 5 club seats to a Dallas Cowboys football game with a 3-night stay at The Magnolia, a downtown Dallas boutique hotel (donated by Kevin Cozzie and the Magnolia Hotel) - won by Drew Terrell

~ A custom-made diamond necklace (handcrafted and donated by Phil Haas Jewelers) - won by Joey Rauen

~ Double Lasik eye surgery (donated by John Kenyon American Eye Institute) - won by Jill Yates

~ An NFL football signed by Indianapolis Colts quarterback Peyton Manning and former Colts head coach Tony Dungy - won by Rebecca Johnson

When all was said and done, we raised over $30,000!!!! All money was given to Children's Craniofacial Association to help them continue to support the many families affected by craniofacial conditions and raise awareness. Blown away doesn't even begin to describe how I felt as I was adding up the numbers. My original goal was $10,000, which I thought was a lofty one!