In 1994, Karen Ferencz and Jeff Matros were anxiously awaiting the birth of their second daughter, Nikki. Karen owned and operated a successful restaurant, Jeff was in the fast track of the telecommunications industry, and their eldest daughter, Jesse, was thrilled at the prospect of a little sister. When Nikki was born a happy, healthy baby, they felt their lives were complete.

Six months later, Karen noticed that her daughter would gag during feedings and had extremely low muscle tone. Alarmingly, Nikki's head would roll to the side and she would twitch uncontrollably. Jeff and Karen sought medical advice, but were told that Nikki's symptoms were not serious, and that she would grow out of them. At 12 months, Karen decided it was time to seek additional medical advice. At 15 months old, the couple entered Nikki into an early intervention program where she was examined by several neurologists and initially diagnosed with delayed development and pervasive developmental disorder (P.D.D.), a developmental disease on the autism spectrum. Karen and Jeff refused to accept this diagnosis, believing that Nikki did not quite fit the profile for P.D.D. Finally, after numerous tests and a 48-hour brain scan, a tearful young neurologist walked into the waiting room. He diagnosed Nikki with Rett Syndrome (RTT), told her parents that there was nothing that could be done, and walked out.

Following the crushing RTT diagnosis, which Karen calls "the Rett monster," they became determined to make sure Nikki's life remained as full and normal as possible. According to Karen, the most difficult aspect for the Matros-Ferencz family is "keeping up with the disability and managing Nikki's care. Every day seems like an endless battle." They know that Nikki is very aware of what is going on around her, and that it is extremely frustrating for her to be unable to speak and trapped in a body that she cannot easily control. However, they believe that Nikki's greatest joy is to be surrounded by family and friends who can truly understand her. "She loves it when people get her," explains Karen.

Although Karen was forced to sell the restaurant to care for Nikki after her diagnosis, she and Jeff opened a new restaurant in the Fall of 2006 - Memphis Mae's BBQ Bistro - which Jeff runs full time and at which Karen works several nights a week. Karen also works as a part-time dental hygienist while continuing to care for her daughters. Nikki, who is now 12, attends school full time and Jesse, 17, is a senior in high school.



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