When I was little I would pretend I was a famous movie star. I would close my eyes and imagine that I was on a plush red carpet- dressed like a princess from head to toe- surrounded by paparazzi and hundreds of adoring fans clamoring for my autograph. I remember wondering what it would feel like to have all eyes on me- even just for a few moments.
On November 22, I watched my childhood dream come true for twelve incredibly brave- incredibly special- children at the 7th Annual Little Smiles Foundation Stars Gala, hosted this year by Alex Holley of Fox 29â€™s Good Day Philadelphia.
This glitzed out event is modeled after the Oscars (yes, the red carpet and paparazzi are included!) except the celebrities that walk this red carpet are children battling injuries and diseases. The stars arrived in style at the Please Touch Museum in a limo- dressed in little tuxedos and over-the-top princess dresses and rocking some serious sunglass bling. They were immediately whisked away to the exclusive pre-party where they hung out with the Philly Phanatic and rode the carousel at least a dozen times.
Despite their every day lives being consumed with infusions, appointments, tests, treatments- and the occasional late night trip to the ER- this incredible group of children were rushing to ride the carousel and splash around in the museumâ€™s fountain. They lined up at the photo booth with their friends to see who could make the silliest face and wear the most props at one time. They gave media interviews, walked the red carpet, posed for the camera, and signed autographs. They ate more pizza and sugar encrusted marshmallows on a stick than they probably should have- and it was ok. Because beneath the tutus, miniature tuxedos and glittering rhinestone tiaras were kids who desperately wanted one night to not be defined by their diagnosis and justâ€¦be a kid.
The mission of Little Smiles is to help children with illnesses, injuries, or challenging circumstances enjoy being a kid again- they deliver the fun! Delivering requested toys and kid-approved junk food, providing shopping sprees, and coordinating celebrity meet and greets are just a few of the unique ways that Little Smiles helps children forget about the pain theyâ€™re in for a few moments and just have fun.
I had the honor of attending this yearâ€™s Stars Gala with my dear friend Lisa Moreno-Dickinson, who is the Founder and President of Stop Childhood Auto Inflammatory Disease Now (Stop CAID Now). Both of her sons had been selected as 2014 Stars. Her youngest son Brody is five years old and suffers from Atypical Blau, Vasculitis, and an overlap of CAIDs which causes severe inflammation and affects his entire body- including his brain. He is the only child to receive infusions twice a month at Childrenâ€™s Hospital Of Pennsylvania (CHOP), and there is no prognosis for him at this time. Her oldest son Aidan is nine years old and suffers from a type of connective tissue disorder called Ehlers Danlos (type 111) Mitochondrial findings, Hyper-Mobility in his joints, Pain Syndrome, and sensory issues. He has a history of Auto-Immune disease with inflammatory responses, often resulting in excruciating pain and exhaustion and rendering him unable to use his legs.
Despite their circumstances, Lisa insists on celebrating the everyday moments and living life beyond the medical appointments and medications. She responds to everything life throws at her with more strength and grace- a bigger sense of humor- than I have on my best day. She is the kind of crazy fun mom that wears Superman underwear on those incredibly stressful days when only a large dose of unexpected comic relief will do the trick, and lets her boys smash plates in the driveway in order to really express their frustration.
As the event drew to a close, reality began to sneak back in. Many of the little stars were overcome with exhaustion and some had succumbed to intense pain and were no longer able to run around the dance floor. Lisaâ€™s evening ended much earlier than expected because Aidan was in a lot of pain- so much so that he would have normally been carried to the car had he not been so determined to finish the evening strong. As both boys clutched their awards tightly, she told me she knew this was going to be a tough, painful night with very little sleep because theyâ€™d pushed it so hard. But, she quickly countered, tonight was all about them having fun and forgetting about the pain, and THAT mission had certainly been accomplished!
Lisa is a pillar of strength for her boys and all those who suffer from CAIDs, but that night she let the tears fall shamelessly as she watched all the little stars be recognized for who they are instead of what they have. The Stars Ball was truly a night that Lisa, Brody and Aidan will carry in their hearts forever.
To learn more about how you can support Little Smiles Philadelphia throughout the year, visit Little Smiles Philadelphia. To learn more about Stop CAID Now (and to keep up with Lisa and her boys), visit Stop CAID Now.
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