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About director Michael Knowles




On April 15th, 2005, I met Nikki's parents at a mutual friend's 50th birthday party in NYC. We were talking about life and whatnot when they mentioned their daughter Nikki, who they said had Rett Syndrome. "What's that?" I asked. The way Nikki's parents, Jeff and Karen, talked about her touched me in away that did spurred me to action. I like to call it instinct, but whatever it was, something inside of me told me that something important had just happened.

It was about seven months later when I met Nikki; November 11th, 2005. I will never forget the day. Her smile and presence captivated me. She and I became friends instantly. My camera was rolling from moment one. Two weeks after I met her Nikki had to have spinal surgery, for severe scoliosis is one of the many clinical effects of Rett Syndrome.

Children with Rett appear to develop normally until 6 to 18 months of age when they enter an irreversible period of regression, losing speech and motor skills. Most develop repetitive hand movements, irregular breathing patterns, seizures, and extreme motor control problems. Rett leaves its victims profoundly disabled, requiring maximum assistance with every aspect of daily living. There is no cure.

After getting to know Nikki, I had to understand what Rett Syndrome was, and more importantly, who was trying to find a cure. I met with the world's most leading researchers on Rett Syndrome and at first felt completely and totally confused and helpless. Although the breakthroughs in Rett Syndrome research were coming at what some would consider an amazing pace, I still got the feeling that the cause of this disorder, a mutation on the gene called MECP2, was still a complete unknown, which was very discouraging to me.

This feeling changed when, in June of 2006, I attended the annual Rett Symposium in Chicago, which is hosted by the Rett Syndrome Research Foundation. I was granted access to hear researchers discussing the most cutting-edge technology to date on Rett Syndrome; everyone was asked to sign a confidentiality agreement because most of the research being shared had not been published. During that conference Dr. Adrian Bird, a leading scientist from Scotland, shared his most recent discovery, which I was granted permission to record with the promise I would not share until it was published.

He revealed to everyone that he had successfully reversed the symptoms of Rett Syndrome in a mouse model. For me and everyone else in the room, this was very, very, very exciting news. It gave everyone the evidence that the underdeveloped brain cells in Rett patients, if given the proper amounts of protein produced by MECP2, could achieve full health and growth. His research also indicates that this would be possible for all patients at any age who suffer with Rett Syndrome. Dr. Bird's research was published in Science Magazine in February of 2007.

My intention first and foremost in making this documentary was to let audiences know my friend Nikki. I also feel it is important for people to understand Rett Syndrome so that it may be easier to talk about. Even with the breakthroughs made, a cure is along way off, and awareness is the key to making a change.

I hope to touch people's hearts and souls and to stimulate their minds. Hopefully this film will encourage audiences to be more mindful of themselves and others and to be more grateful for what they do have as opposed to obsessing with what they don't have. Sometimes I catch myself wanting and not being happy with where I am, which doesn't allow me to enjoy my life and my journey.

Nikki's courage, presence, strength and sense of humor has helped me put things back into perspective. I hope after seeing this story it does the same for others. I also hope this film encourages everyone to get to know people who suffer with disorders and include them in society like Nikki's community and school has. I would also like to see people dig in their pockets and donate money to help find a cure for Rett Syndrome.