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Brooke Greenberg: The 20-year-old trapped inside an infant’s body

Examine a series of photos of the now 20-year-old Brooke Greenberg, and it may take a moment to notice something is amiss. The same small child appears in each photo, often next to her sister. She appears to be about one year old, and in each successive photo, her sister gets a little bigger and older, but the little girl’s tiny face and body remain identical.

Today, Brooke Greenberg is 20 years old, yet she resembles an infant weighing only 16 pounds and measuring a mere 20 inches long.

Trapped in the body and mind of a nine to eleventh-month-old child, Brooke can smile and crawl, but cannot speak or walk. Aside from her spindly limbs and delicate frame, Brooke looks like any other infant, yet she is almost completely unique in the world. Something inside of her has virtually halted the aging process, and scientists are clamouring to pinpoint the cause.

“She’s not broken, there’s nothing to be fixed,” says Brooke’s father Howard Greenberg in an appearance Thursday on the talk show Katie.

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When Brooke was born, it was immediately clear she was not normal. Her bones were so disjointed and malformed that her four-pound body needed to be encased in a full cast to correct the problem. There were seven holes in her abdominal wall that had to be repaired, and nearly every organ in her body was altered in some way. Her respiratory and digestive systems did not develop in unison, and as a result she could not eat real food or breathe properly. Her parents were sure their fragile baby would die before they did. Yet miraculously, Brooke persevered.

Nineteen years have passed since then, and Brooke is virtually unchanged. The same cannot be said of the people and the world around her. Her mother, Melanie, is in her 50s, and her sister has become a young woman while Brooke remains in diapers. She still has her baby teeth, and the only parts of her body that grow normally are her nails and hair.

Eternal life is a fantasy as old as humanity itself, yet in Brooke, we have an example of what real immortality might look like, and the negative consequences are immediately obvious.

While her parents and doctors refer to her as a “miracle” and a “gift” that may unlock the secrets of longevity, Brooke’s own father, Howard, has admitted that describing her as such is his way of easing the burden of caring for an adult in Brooke’s condition. Who will look after this endless infant when her parents and siblings become too elderly to do so?

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Even defining her condition is difficult. Is Brooke’s agelessness a gift, or a disease that needs curing? Our bodies are designed to age, and when they don’t, there are complications. In her first six years alone, Brooke suffered strokes, seizures, ulcers and breathing problems. She cannot eat real food and must be fed through a tube.

In the past several decades, science has brought us to a point where death is viewed by many as a disease to be cured. For those seeking the fountain of youth, Brooke’s highly dysfunctional body could serve as a dire warning.

But to scientists like Eric Schadt at Mt. Sinai Medical Center in New York, Brooke is not a warning, but an answer.

Schadt is currently sequencing Brooke’s genome in an effort to pinpoint the abnormality responsible for her condition. It is his hope that by manipulating or even turning off the responsible gene, he will be able to control the aging process. He’s also hoping it might lead to the development of new treatments for diseases related to old age, such as Parkinson's.

"If they can find alterations in genes that are thought to govern the aging process, or are related to it, then it might be possible," says Cheryl Grady, a senior scientist at Toronto's Rotman Research Institute and an expert on aging and brain activity.

Grady says Schadt's success will depend on how well he can pinpoint exactly which genes are influencing aging, but she cautions, "we still don't know what most of the genes actually do."

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The unnatural extension of human life through science raises many questions, and we can look to Brooke for many of the answers. First, do we even want to unlock the secrets that Brooke’s tiny body may provide? If we could stop aging, would it really be desirable to stay the same age for hundreds and potentially thousands of years? Is Brooke’s endless childhood really immortality or an illness?

She also raises profound philosophical questions. Removing humanity’s one great equalizer – death – is an idea fraught with ethical complications. Who would receive this hypothetical life-prolonging treatment? Who would be allowed to procreate? How would the planet sustain us, and is it playing God to toy with the one unknown we have yet to conquer?

For Schadt, these are questions best left to philosophers and politicians: the work of a scientist is discovery.

For Brooke's family, such questions usually take a back seat to simply caring for her. On Katie, Brooke's mother Melanie expresses the uncertainty that comes with her unusual child.

"The key with Brooke is we don't know what tomorrow brings."