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Tuesday June 30, 2009

Forever young

There lives in Baltimore, a girl for whom time seems to have stood still.

GIRL who never ages! Another implausible tale akin to the 1921 short story, The Curious Case Of Benjamin Button by F. Scott Fitzgerald of a man who ages backward, perhaps? Unlike that work of fiction recently made into an Oscar-nominated movie with Brad Pitt as the protagonist, this is as real as they come.

The cliché of truth being stranger than fiction certainly holds here. Brooke Greenberg may have turned 16 in January but in appearance, she looks like a toddler. When she was eight, according to the MSNBC website, she appeared to have the size of a six-month-old baby, weighed just 5.9kg and was 68cm long. Eight years on, Brooke weighs 7.25kg and stands at 76cm tall, reports ABCNews.com. That’s a gain of just a little more than 1kg and less than 10cm!

At 16, Brooke, who lives in Baltimore, Maryland, should be about two years away from graduating high school. She would also have had the chance to get her restricted driver’s licence, a milestone for most teenagers in the United States.

But she will not have the opportunity to realise any of this. Brooke has the mental age of an infant and doesn’t speak a word. Yet she apparently has the personality of a 16-year-old although she voices her agreement or displeasure as a baby would, with infantile sounds and laughter and tears.

But the question that no one can answer is what her father, Howard, 52, has been asking for most of her life.

“Why doesn’t she age? Is she the fountain of youth?”

And there seems no precedence anywhere to help doctors pinpoint the reason – Brooke seems to be the only such case in the world.

“Many of the best-known names in medicine, in their experience ... have not seen anyone who has matched up to Brooke,” says her paediatrician Dr Lawrence Pakula of Baltimore’s Johns Hopkins School of Medicine.

She has never been diagnosed with any known genetic syndrome or chromosomal abnormality that would help explain why. Dr Richard Walker of the University of South Florida College of Medicine has co-authored a paper with Pakula, among others, that touched on Brooke’s mysterious condition. Dr Walker says Brooke’s body is not developing as a co-ordinated unit, but as independent parts that are out of sync.

In fact she still has baby teeth but her bone age is thought to be more like a 10-year-old.

Brooke’s mother, Melanie, 48, found that even her pregnancy was pretty unusual. “They checked for growth size every month. One month she would be fine, one month she would just stop and play catch-up,” recollects Melanie.

She was born one month premature and barely tipped the scale at 1.8kg (that’s slightly less than two bags of flour that you get at the supermarket). Brooke was also born with a rare condition called anterior hip dislocation (the hips were pushing forward and put her legs in a very awkward position). She had surgery, was put in casts and had to lie back with her feet in the air. Currently she moves around by crawling or pushing herself forward.

The 16-year-old can recognise her parents and her three siblings, Emily, 22; Caitlin, 19, and Carly, 13. None of her sisters exhibits any traces of her symptoms. Carly, in fact, sees Brooke as the little sister in the family.

Last Friday, American TV station ABC aired a segment about Brooke on their show 20/20. On Aug 2, a documentary of Brooke’s life will be shown on TLC in America.

Initially, both Howard and Melanie did not pick up on anything that was different about Brooke’s progress. But when she turned one and still had the body of a six-month-old, they grew worried. Doctors told them, she would eventually catch up.

But Brooke didn’t. And the numerous specialists they consulted didn’t have a clue why. They tried growth hormones, but that didn’t work. The only things that grow are her hair and nails.

But the Greenbergs would have to contend with a lot more than Brooke’s failure to grow. There came one medical emergency after another although she recovered from all of them. And for some of those recoveries, the doctors could not find an explanation.

She had surgery for seven perforated ulcers. She had a brain seizure, followed by a stroke but it apparently left no damage.

At one point they were prepared to lose her for good. At four, she fell asleep and slept for 14 days. It was a brain tumour, they were told.

“When you have to go to the funeral home and pick out a casket, or go to the store and pick out the last outfit ... it’s like a rollercoaster ride, mentally and physically,” says Melanie.

But then the miracle that is Brooke kicked in: she woke up and the tumour was gone!

In the early years, she could eat normally but her oesophagus stopped growing. Food then kept getting backed up into her lungs and it gave her respiratory problems and could cause pneumonia. As a result, Brooke is now fed through a tube inserted into her stomach.

Life for the Greenbergs revolve around Brooke and they wouldn’t want it any other way. Her mother says: “We’re not a family without Brooke.”

She even goes to school, a special education public school. One of her teachers says, while there seems no perceptible change, “I think, in her heart, she changes. I think from day to day, there are changes.”

During the day, Brooke has someone taking care of her. Her father says she doesn’t appear to have a concept of time (physiologically time seemingly does stand still for her, after all). She likes movement but is also content being in her crib.

Dr Walker and his team think that Brooke has a never-before-seen genetic mutation that affects the way she ages (or not). Isolating that gene might provide key information on our mortality.

“Without being sensational, I’d say this is an opportunity for us to answer the question, why we’re mortal, or at least to test it,” says Dr Walker.

None of them though are willing to predict how long Brooke could live. Brooke’s family, on the other hand, have accepted the fact that she will never grow up. But they’re happy if she held the key to the fountain of youth.

“We’d like to help people. Everybody’s here for a reason. Maybe this is why Brooke is here,” Howard hopes.

Go to www.youtube.com/watch? v=jBbG2tSDfOo or www.msnbc.msn.com/id/21134540/vp/9797856#977856 for videos of Brooke taken in 2005. For the latest video on Brooke from the ABC’s 20/20 aired in the US last Friday go to www.youtube.com/ watch?v=ghlT_zNYl60

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