Wednesday, October 19, 2011

The BeNETTAfit - Save the Date for a Celebration

On Saturday, November 12, 2011, Green Baby Diaper Service and Infinity Photography and Design are holding a benefit for Netta Saggese, an inspiring 2-year-old. She has a seizure disorder called Lennox Gaustaut Syndrome, which is a severe form of epilepsy. Scientists have not yet found a cure for the disorder, so the Saggese family must manage Netta's condition with a variety of medical treatments, some more effective than others. 

Here is Netta's story:

"With a wink of her eye at only 2 months old, our Netta Smith clued us in that our world was about to change. The wink was actually the first of countless seizures she would have for what may be the rest of her life. These seizures have taken a variety of forms and all have hindered her development. When New Hanover Regional couldn't provide the adequate equipment and specialists, we made our first of multiple visits to Chapel Hill.

The right combination of medicine settled the seizures for almost two months until they came back unexpectedly on a Friday night. Ugh. Another trip to Chapel Hill had us try a dietary treatment (Ketogenic Diet) that ultimately sent Netta into renal failure. Yikes. When medicine alone couldnt get full control of the seizures, we truly began our advocacy mission as we traveled the east coast interviewing specialists who performed neuro-surgery.

Our decision was to go with Dr. Weiner at NYU, who remains our closest confidant. Unfortunately, after placing monitors directly on her brain for 2 weeks, it was clear she was NOT a candidate for surgery since the seizures were too wide spread. D'oh.

Regardless of how many strikes we have encountered, we are determined to keep swinging and playing ball. Playing ball is now the medicine game as we are slowly working to remove a medicine that keeps her from sweating, which in turn can make her overheat, which brings on...seizures! Its a tricky game but there are a lot of options that we can still try and even more that just need to be approved in the United States.

Netta is officially diagnosed with a seizure disorder called Lennox Gaustaut Syndrome. Netta is now 2 years old, and despite her cortical visual impairment, lack of speech, and global delays, she has managed to make great strides thanks to her incredible teachers, therapists, doctors, and surgeon. Her laughter has become what sunshine is to plants and her strength is as mighty as the ocean. She is a joyful child who brings light to everyone who meets her. She is an absolute gift to this world as she teaches us all how precious life is and how important a support system can be.

From the beginning, the ladies at Green Baby Diapers (and many others) have proven that the power of the human spirit knows no end. We are ever grateful for their support efforts in helping us along on our adventure. We are even more excited for the upcoming BeNETTAfit as it sounds to be all the things we love to do as a family-outdoor games, music, food, and friends! Looking forward to seeing you all there."

The tournament will take place at Mayfaire Town Center in Wilmington from 11 A.M. to 4 P.M. on Saturday, November 12. 

Register to play or donate money at or just come to share some fun and games with the family. 

Contact Liz at info {at} greenbabybiz {dot} com if you would like to sign up to be a vendor at this fun family event!

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