The Hell of Perpetual Youth

 Posted by on 24 June 2009 at 11:01 pm  Culture
Jun 242009

Wow: Doctors Baffled, Intrigued by Girl Who Doesn’t Age:

Brooke Greenberg is the size of an infant, with the mental capacity of a toddler. She turned 16 in January. “Why doesn’t she age?” Howard Greenberg, 52, asked of his daughter. “Is she the fountain of youth?”

Such questions are why scientists are fascinated by Brooke. Among the many documented instances of children who fail to grow or develop in some way, Brooke’s case may be unique, according to her doctor, Johns Hopkins School of Medicine pediatrician Lawrence Pakula, in Baltimore. “Many of the best-known names in medicine, in their experience … had not seen anyone who matched up to Brooke,” Pakula said. “She is always a surprise.”

Brooke hasn’t aged in the conventional sense. Dr. Richard Walker of the University of South Florida College of Medicine, in Tampa, says Brooke’s body is not developing as a coordinated unit, but as independent parts that are out of sync. She has never been diagnosed with any known genetic syndrome or chromosomal abnormality that would help explain why.

The whole story is well worth reading. Her medical history is interesting — albeit in a kind of gruesome way. However, I’m far more disturbed by the way in which the family, particularly the parents, have devoted their whole lives to caring for this perpetual child.

Brooke has a caretaker during daytime hours, but the family’s schedule revolves around her, year after year. The Greenbergs take no vacations, have few nights out and involve Brooke in as many family activities as possible. “To go to a swimming pool for the summer, or belong to a summer club … we tried all those things, and it’s lacking something,” her mother said. “Brooke’s not there. We’re not a family without Brooke.”

And, of course, Brooke goes to school at taxpayer expense:

Brooke goes to a Baltimore County public school, Ridge Ruxton, dedicated to special education. Based on her age, she would be a junior in high school. Jewel Adiele, one of Brooke’s teachers, said she wonders sometimes what Brooke is thinking or perceiving.

Brooke’s whole life is a strange kind of tragedy. It’s abhorrent to think of her parents caring for her as a perpetual infant until the end of their days, but I cannot see what else they might do. And what will happen to her if she outlives them? Will her siblings inherit the burden, as often happens with severely autistic children? Even worse, the parents seem in the grip of warm and fuzzy feelings for their daughter, not guided by an honest recognition of the degradation and sacrifice involved in caring for a perpetual infant. They’re spending their one and only lives on the care of a creature that — by its very nature — is more like a pet than a daughter. That’s a terrible waste of a life.

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