A voice for the voiceless
Feb. 15, 2008 - Smiling and actively enjoying a TV show on Nickelodeon, five-year-old Maiya Novitsky has overcome many obstacles in her short life to be able to enjoy weekday afternoon cartoons at home. Maiya was five-days-old when she was abandoned on the side of a road in Nanhai, China. Her adoptive father, Scott Novitsky, endured a long and arduous process to bring her to America and adopt her, only to find out a year after Maiya joined the family that she suffered from Rett Syndrome, a severe developmental disorder.
“We never anticipated this, we thought we were getting a healthy girl,” Scott Novitsky said. “Life happens.”
Many scientists point to embryonic stem cell research as a hope for curing many different diseases. Novitsky, an active advocate of Rett research and public awareness, thinks it's not right to destroy human life to research a possible cure to any disease.
When first faced with finding treatment for Maiya, Scott was unsure about whether he could support embryonic stem cell research. After careful examination, he ultimately decided that he could not support any research that results in the ending of a human life, no matter how small that human life is.
“The parents of children with conditions that are thrown into situations like this, I think it's unfair to have them decide between research options,” he said. “Decisions should not be based on emotions; you could make a lot of wrong choices.”
His decision had a very significant impact on his work. It forced him to evaluate his relationship with the International Rett Syndrome Foundation. While the foundation does not fund any research using human embryos at this time, they have not made a definitive decision on the issue for the future according to Scott.
“I had to ask myself, am I raising money for an organization that's using embryonic stem cell research?” he said.
Fortunately, scientists have been making breakthroughs with treating the disease in mice without using human embryos. A February 8 press release by the Rett Syndrome Research Foundation claimed a reversal of symptoms in mice undergoing drug treatments. Scott argues that researchers should focus more attention and money on treatment methods that don't involve harming human life. He believes adult stem cells and drug therapies can hold the key to treating other serious conditions.
“I have to believe that's the case with a lot of diseases out there,” he said.
Scott said that we are already surpassing with adult stem cells what they wanted to do years ago with human embryo-destructive research. He said he doesn't understand why many scientists don't pursue the new ethical process instead of continuing to advocate killing human embryos for research. He also doesn't understand how those scientists can't recognize that the human embryo is a living, unique individual.
“What would those scientists who argue 16 cells aren't life say if those cells were found on Mars? They wouldn't say 'we have found 16 cells of mush,' they would say 'we have found life!'”
There are many parallels between Maiya's struggle and the struggle for allowing human embryos to live according to Scott. He said we should protect all people, especially those who have no voice to do it themselves, including human embryos.
“My daughter can't speak for herself,” he said. “Somebody has got to speak for them.”
Rett Syndrome is not a widely known disease. First noticed in 1954, the disease did not become a mainstream medical concern until 1983, according to the International Rett Syndrome Foundation. Novitsky said that even local doctors aren't familiar with the disease.
“We've made countless trips to the ER with problems and we'll have doctors come in and admit they just looked up Rett Syndrome online,” he said.
The syndrome is an almost exclusively female disease, caused by a single gene mutation. Children stricken with it appear to develop normally at first, but usually from six to 18 months after birth their motor skills and speech regress, to the point where they no longer talk and lose any purposeful use of their hands. There are usually many other symptoms and complications including slowed head growth and seizures. Most children require constant daily assistance.
People with Rett Syndrome typically live well into adulthood, with an average life expectancy of 47 years according to the International Rett Syndrome Foundation. They tend to enjoy interaction with other people, and learn to communicate with their eyes.
“Girls with Rett are very flirty,” Scott adds.
Maiya's journey to America in 2003 was very difficult. Scott and his family spent 3 years working through the adoption process before they could bring Maiya home. The adoption process with China was fraught with difficulties over the SARS scare, the September 11 attacks and the 2001 Hainan Island spy plane incident.
“Days before we were supposed to travel, she was in a hot zone of SARS,” Scott said. “We were one of the last groups by a day or two to make it to China. We were really lucky to visit the orphanage.”
They were told to expect developmental delays, but when Maiya began having trouble holding her hands up or sitting up, they knew there were serious problems.
“She was literally like a newborn baby again,” Scott said.
Scott, an employee of the City of Grand Rapids, lives in Walker with Maiya and his two other children, Mitchell and Lucas. Inspired by his daughter's condition, Scott has become an advocate for Rett Syndrome awareness. He is currently working with State Rep. Dave Hildenbrand on a bill to proclaim the first week of October as “Rett Syndrome Awareness Week.” He also has worked with International Rett Syndrome Foundation, and has produced a website among other things.
“I wrote a whole book on it,” Scott said about his unpublished work on the disease.
Scott said that Maiya's life has been wonderful in affecting so many people in so short a time. She has participated in research studies, been featured in many stories bringing awareness about Rett Syndrome, and has been a positive force in the lives of the Novitsky family. Scott said it was amazing how one girl abandoned on the streets of China can touch so many lives.
“Maiya is a teacher, she's teaching a lot of people,” he said. “She's taught me to stand up for her, to go down to Lansing. She's taught her brothers compassion, she's just meant so much.”