A Family's Story

Marc and Marla Shapses and their 13-year old daughter, Emmory, seem just like any other family, with their Shih-Tzu named Sweetie and the soundtrack to "High School Musical" blasting from the stereo. But from the time Emmory was born, it was apparent that something was wrong. When Emmory was a toddler, her diaper bag, in addition to the usual pull-ups and wipes, contained a half dozen medicines, a CPR machine and emergency medication to counter the possibility of a life threatening seizure.

Emmory has tuberous sclerosis complex (TSC), a disorder that can cause seizures, deforming facial tumors and other skin abnormalities, organ failure, autism and mental retardation. While TSC impacts nearly one million people, a frustrating lack of awareness, even in the medical community, plagues families struggling with the disorder. In Emmory's case, this lack of awareness delayed an accurate diagnosis, forcing the Shapses family to endure nearly five months of misinformation and confusion.

Emmory spent the first 18 days of her life in the hospital, leaving Marla to go home without her baby, a devastating experience for any mother. As a newborn Emmory stopped breathing, with her doctors unable to explain the cause. When Emmory was finally released to go home, Marc and Marla alternated sleepless nights at their daughter's cribside, ensuring that she did not stop breathing. Emmory's aunts and grandmothers were a tremendous help, staying by Emmory's side at night to allow Marc and Marla to get some sleep.

At the age of 3 ½, Emmory underwent brain surgery in an attempt to control her constant seizures. The surgery helped, but Emmory still has seizures daily. Now, several years later, the Shapses family must decide whether they want to risk another surgery, not knowing if it will even help this time.

Marc and Marla strive to provide Emmory with the most normal childhood possible, but the reality of her condition is difficult to ignore. On one trip to Disney World, Emmory visited attraction after attraction, delighted with the exciting sights and sounds. Suddenly, however, she began having trouble with her legs and the problem worsened as the day went on. Many weeks later it was determined that she had suffered toxic poisoning from one of the many drugs she was taking.

Marc and Marla have become experts on TSC in the past several years, and in the process they have worked to raise awareness of the devastating illness. While progress is being made in the search for a cure, research requires funding, and funding depends on awareness. In addition to seeking help for their daughter, Marc and Marla are committed to educating people about tuberous sclerosis complex and helping to find a cure.

The Shapses family is active in the Tuberous Sclerosis Alliance. By creating the Emmory Reagan Shapses Classic, an annual golf outing, Marc and Marla are raising hundreds of thousands of dollars for the TS Alliance. More importantly, this event continues to raise awareness and generate annual revenue for research and support.