4.28.2010

I love a medical mystery

I came across this story recently due to a mention in an Allure magazine.  Brooke Greenberg is 16-years old in that she was born 16 years ago, but is only 2 1/2 feet tall, weighs 16 pounds, has 10-year old bones, 6-year old teeth, and a brain that is less than 1-year old.  Due to a mutation in the genes controlling development and aging, her body is not developing as a whole unit but rather as bits and pieces aging at their own rate independent of each other.  It's quite amazing.

(left to right) Older sisters, Caitlin, age 4, and Emily, 8, with Brooke, 1
Photo from Fox News.

(left to right) 11 years later, Brooke, now age 12, and younger sister Carly, 9.
Photo from ABC News.

You can go here for more photos.  It's interesting to notice that in the photos where Brooke is 1-3ish years, she still has her baby fat, but as she's gotten older it seems as though she has thinned out and lost the baby fat (as you would expect any growing child to).



I think it's especially intriguing to hear her family describe her personality.  Like this quote from her sister, Caitlin: She looks like a 6-month-old, but she kind of has a personality of a 16-year-old. [End quote]  And reports from her mom about how she likes shopping and rock music.  Now I'm no expert in babies, but it seems as though her mind is developed past that of a typical infant even though she is unable to voice it.  Makes you wonder what she's thinking or if she is aware that, somehow, she is different from her sisters.

Also mind boggling is her ability to surpass health obstacles thrown her way.  Such as seven perforated stomach ulcers, surviving a stroke with no apparent damage, and sleeping away a brain tumor (re: this article).  Seems as though there's more than some unsynchronized development going on here.

Frankly, not only Brooke, but her family as well, is a novelty to society.  They don't abandon her; they don't leave her w/ the nurses to go about their lives and play with all the other grown-ups.  They stick by her side and love her for the person she is.  "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.' (re: this article)." 

It's settled, Brooke and her family are awesome.

 Brooke, age 16; mom, Melanie; dad, Howard; and sister Caitlin, 19.
Photo from Fox News.

And now I have to rant about some stupid people (Ok, they're probably not stupid, but they say some stupid things.).
First: A quote (re: this article) from Dr. Richard F Walker of Clinical Intervention in Aging:  Brooke is a unique individual because she has a mutation in the developmental gene that prevents her from aging, and she’s in the developmental phase...There’s no hope for her, but what she brings to science is information on how we may be able to delay aging. [End quote]
Are we as a society actually so paranoid of growing old that the first thing we think of from Brooke's story is the Fountain of Youth*?  Take a second to think about this.  Brooke's genetic anomaly seems to be affecting, not aging, but her development, which is at the opposite end of the spectrum as aging.  Her body doesn't enable her to walk, no coordination to dance or jump.  Her brain doesn't allow her to learn higher levels of communication; she clearly has an evolving personality and preferences, but she can't speak about them or write them down or express these through sign language.  Now, do we really want to dabble in these genetic mutations just so our skin stays smooth and our bodies remain enabled indefinitely?  Maybe there's a reason for becoming old and decrepit and dying.  Maybe it's the circle of life (yes, that was a Lion King reference).  Maybe we should get over our mortality and accept it.


Second, and related to first, is Greg (I don't know Greg but I'm using his name because he did.), he left this comment on a 2005 blog post that was debating whether or not Brooke's story was a hoax (At that time there wasn't much media coverage.).  Quoting Greg:  If this girl really is a medical miracle then the human race deserves to have their best take a look. Genetic anomalies like this are probably rare and maybe would be hundreds of years to have another chance to study. [End quote]  Really, Greg?  Really?!  The human race DESERVES to take a look.  So are you saying we DESERVE to poke at every single abnormality out there, without considering the desires of the abnormality's owner, the PERSON?  Really?  If so, can we have our "best take a look" into how you came to make statements reeking of such douche-baggery?

Ok, I'm done ranting.

*For the record, conquistador Juan Ponce de León, didn't actually mention the alleged Fountain of Youth in his diaries (Yes, boys keep diaries.); he stuck to the much more rational claim that he was searching for gold.  The connection between the two was made by the historian, Gonzalo Fernández de Oviedo; turns out though, he probably made it up to gain political favor (re: wikialwayscredible).  Damn politicians. 

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