I met Nikki November 11th, 2005. 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. During that conference Dr. Adrian Bird, a leading scientist from Scotland, shared his most recent discovery, which has given hope to one day finding a cure for Rett Syndrome.
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.
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.
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