Maryland 20-Year-Old Dies Never Having Aged

Brooke Greenberg is only one of a dozen children with syndrome X.

ByABC News
October 29, 2013, 9:19 AM

Oct. 29, 2013— -- Brooke Greenberg, who baffled scientists because she never aged, has died at the age of 20, never having developed beyond the physical size of an infant or the mental capacity of a 2-year-old.

The daughter of Howard and Melanie Greenberg from Reisterstown, Md., Brooke is one of about a dozen children in the world who have what some call syndrome X -- a kind of Benjamin Button disorder that prevents them from aging.

Her funeral was Sunday at a synagogue outside Baltimore, family friends confirmed.

"The family is doing as well as can be expected," Chris Cole, a colleague of Brooke's father, told today. "They are going through their traditions this week -- the shiva."

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Brooke has been pushed around in a stroller all her life. In 2009, when her family was interviewed on ABC's "20/20," Brook weighed 16 pounds and was 30 inches tall. She didn't speak, but she laughed when she was happy, and clearly recognized her three sisters: Emily, now 26; Caitlin, now 23; and Carly, now 17.

But only her hair and fingernails grew.

In her first six years, Brooke went through a series of medical emergencies from which she recovered, often without explanation. She survived surgery for seven perforated stomach ulcers. She had a brain seizure followed by what was diagnosed as a stroke that, weeks later, had left no apparent damage.

At 4, she fell into a lethargy that caused her to sleep for 14 days. Then, doctors diagnosed a brain tumor, and the Greenbergs bought a casket for Brooke.

"We were preparing for our child to die," Howard Greenberg told ABC in 2009. "We were saying goodbye. And, then, we got a call that there was some change -- that Brooke had opened her eyes and she was fine. There was no tumor. She overcomes every obstacle that is thrown her way."

Richard F. Walker, a retired medical researcher from the University of Florida Medical School who now does his research at All Children's Hospital in St. Petersburg, has followed Brooke's case since she was about 2 years old, comparing her genetic code with that of other children with the same condition.

"In some people, something happens to them and the development process is retarded," he told earlier this year. "The rate of change in the body slows and is negligible."

Walker wants to learn not only what is wrong with these children but also if others in the family could pass on genes for this rare and baffling disorder.

Their bodies do not develop as a coordinated unit, but as independent parts that are out of sync, according to Walker. No known genetic syndromes or chromosomal abnormalities can explain why.

Brooke still had baby teeth at age 16, and her bone age was estimated to be more like 10.

"There've been very minimal changes in Brooke's brain," he said. "Various parts of her body, rather than all being at the same stage, seem to be disconnected."

Walker also studies Gabby Williams, an 8-year-old from Billings, Mont., who weighs only 11 pounds and a 29-year-old Florida man who has the body of a 10-year-old. Like Brooke, they never seem to age.

"My whole career has been focused on the aging process," he said. "My fixation has been not on the consequences but the cause of it."

Not only do the people he's studying have a growth rate of one-fifth the speed of others, but they live with a variety of other medical problems, including deafness, the inability to walk, eat or even speak.