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"While we recognize and have recognized mitochondrial disorders are associated with . . . autism-like syndrome, there is nothing about this situation that should be generalized to the risks of vaccines for normal children," said Julie Gerberding, director of the Centers for Disease Control and Prevention. "Our message to parents is, immunizations are lifesaving. There is nothing changed in the adamant recommendation we make to vaccinate children."
The Hotez family increasingly found itself angered by the controversy.
"Ever since Rachel was diagnosed, we heard about the possibility of thimerosal contributing to autism," said Rachel's elder sister, Emily, who is interested in studying the genetic causes of the disorder. "It has been frustrating because I know a lot of this talk about the vaccines, and how a special diet can cure autism. I know it takes away a lot of the funding that is needed to identify the biological markers of autism."
Peter Hotez told his wife it was amazing how much attention the media was paying to unfounded fears, when it paid so little attention to neglected diseases affecting the poor in the United States and other countries. Some 6,000 African American babies are born each year with congenital cytomegalovirus infection, a viral disease transmitted to babies in the womb that causes mental retardation and hearing loss. About 880,000 African American women each year come down with trichomoniasis, a parasitic infection. Another parasitic worm infection called toxocariasis causes asthmatic symptoms in about 2.8 million poor African American children. Hispanics are especially affected by Chagas disease, which causes severe heart disease, and cysticercosis, a parasitic worm infection that causes epilepsy.
Much of the time, the Hotez family is not thinking about public controversies; they are simply struggling to make do. For years, the family could not afford to have Rachel seen by a child psychiatrist, partly because there aren't enough child psychiatrists and because Peter Hotez found that his insurance offers very little coverage for serious mental health problems. Many specialists have stopped taking insurance altogether.
Dealing with Rachel was like having to tread water all day: It was exhausting. Instead of trying to locate blame, the Hotezes wondered why Congress was not moving to set up mechanisms to help families with simple things such as respite care -- having someone take Rachel out for a few hours on an enjoyable trip, while the family caught its breath.
In school, Rachel found herself lumped together with other autistic children, but because she is much more verbal than her peers, she has not been able to make connections with other children. But putting her in a classroom with normal children is also out of the question because, verbal skills aside, she is intellectually disabled. Emily, now 18 and about to be a sophomore at George Washington University, said she has had to share her friends with Rachel, or else her younger sister would have been left friendless outside the family.
"My hope is she can develop an intimate friendship or relationship with someone who is not a family member," Emily said. "She has never really had friends."
The Hotez family declined to allow a reporter to meet with Rachel. Peter Hotez the researcher and doctor can be matter-of-fact about autism, but Peter Hotez the dad cannot bear to let a visitor see his daughter, who has recently regressed to the mental level of a 3-year-old, with bouts of aggression.
"We all wish things were different," he said. "We hoped there would be a day when the girl comes out of Rachel."