Girl Who Doesn't Age May Hold Key to Longevity
By Brenda Brown-Grooms
Can the condition of a severely disabled girl unlock the
secret of how to delay aging?
Her name is Brooke Greenberg. Doctors say the 16-year-old
resident of Baltimore, Md., is growing older but is not aging. 
Dr. Richard Walker discovered that she developed a
mutation of the gene that controls aging and development. “Brooke is a
unique individual because she has a mutation in the developmental phase …
" he said. "There’s no hope for her, but what she brings to science is
information on how we may be able to delay aging.” (http://www.foxnews.com "The Curious Case
of Brooke Greenberg.")
According to Walker, “development and aging are at
opposite poles of the life continuum, but they are controlled by the same
genes.”
Brooke's mother, Melanie, said her daughter grew in
spurts. Her father, Howard, said then when Brooke was born, she was "a little
on the small side, but nothing abnormal … I mean you couldn’t tell
until you witnessed the birth and you saw Brooke.”
http://www.msnbc.msn.com/id/9778227/ns/dateline_nbc/.
A month premature, she was born with anterior hip location
(a rare condition) and weighed 4 pounds. Her pediatrician, Dr. Lawrence Pekula,
told NBC News correspondent Sara James in 2005: “Her hips were dislocated
from where they normally would be … Hers were pushing forward and put her
legs in a very awkward position.”
http://www.msnbc.msn.com/id/9778227/ns/dateline_nbc/.
That surgery behind them, Brooke’s parents thought
she would grow and develop normally. They became worried when she was almost 1
and still about the size of a 6-month-old. While they thought they could handle
Brooke being as much as four years behind developmentally, the Greenbergs were
unprepared for what eventually happened in the life of their third child.
Melanie and Howard took Brooke to one specialist after
another to such places as the Johns Hopkins Children’s Center and New
York’s Mount Sinai Hospital. They even tried growth hormone therapy, but
nothing helped.
Some of Brooke’s doctors labeled her with
“Syndrome X,” signifying that they did not know why she didn’t
grow. Geneticists could find no chromosomal abnormalities, and her pediatrician
could find no references in medical literature. She suffered a number of
unexplained illnesses that her doctors and parents thought would be fatal.
In addition to not growing, Brooke developed stomach and
respiratory problems. She had surgeries for seven perforated stomach ulcers, a
brain seizure and then a stroke (which appeared to have done no damage). Her
tiny esophagus makes it difficult for her to handle solid food -- it often
backed up and went to her lungs, causing respiratory problems -- so she has a
feeding pump. It takes about 10 hours a day to feed her, but the feeding pump
has cut down on hospitalizations.
Because her health is always precarious, the Greenbergs
have two nurses who help them to care for Brooke 16 hours a day.
At age 4, when Brooke was diagnosed with a brain tumor --
a misdiagnosis, as it turned out -- her parents picked out a casket and the
clothes she was to be buried in. She slept for 14 days but didn’t die. She
just didn’t grow much.
When Brooke was 8 she was still the size of a 6-month-old:
She weighed 13 lbs. and was 27 inches long. Today, she is 2½ feet tall
and weighs 16 lbs.
Brooke attends Ridge Ruxton, a special education public
school in Baltimore County. Brooke's brain functioning is low, although her
sister Caitlin said she behaves in many ways like a rebellious teenager. Her
mother said “she loves to shop … just like a woman.”
http://abcnews.go.com/.
In the journal "Mechanism of Aging and Development,"
Walker (who has been studying Brooke’s case since 2006), pediatrician
Pakula and geneticist Maxine Sutcliffe document an unheard-of range of
inconsistencies in how Brooke ages, including baby teeth and bones like those
of a 10-year-old.
Walker wrote: “(T)here’ve been very minimal
changes in Brooke’s brain … Various parts of her body, rather than
all being at the same stage, seem to be disconnected.”
In the overwhelming majority of cases, developmental genes
coordinate changes in our cells that bring us to full-functioning adulthood.
Adulthood marks a point of stability in our development. Aging erodes that
stability. In Brooke’s case, the aging and developmental genes have been
turned off.
According to Walker, if it is possible to isolate those
genes in the human genome, we might not age, or we could switch the aging
process off at will.
While there may be no medical help for Brooke, her family
is only concerned that she gets the best quality of life she can. Her sisters
Emily (22), Caitlin (19) and Carly (13) are attuned to their sister’s
needs.
“She makes it known what she likes and what she
doesn’t like,” said Emily.
Said Caitlin: “(S)he looks like a 6-month-old, but
she kind of has a personality of a 16-year-old … Sometimes we joke about
how she rebels.”
Younger sister Carly said, “(A)s I got older, she was
just like another little sister to me.”
http://abcnews.go.com/2020/Health/Story?id=7880954&page=1
Her father buys her strollers and baby swings because she
loves to swing, and Carly rides her around on an ottoman.
Because Brooke is medically fragile, Melanie Greenberg
said the family doesn’t take vacations, has few nights out and has
schedules that revolve around her. As much as they can, her parents and sisters
mark the passage of her life the way they would if she were physically,
mentally and emotional aging.
When Brooke was 13 she, like her sisters, celebrated a
rite of passage into adulthood, a Bat Mitzvah, according to her family’s
Jewish tradition. It did not matter that she still wears diapers, travels in a
stroller and cannot walk or talk. She is the delight of her family. They
consider her life to be a gift.
No one knows yet whether she holds the keys to eternal
youth. Her parents and sisters know that she holds their hearts, as they hold
hers. When the nurses go home, they continue her care. Her daddy checks on her
in the middle of every night.
Brenda Brown-Grooms is an independent living
coordinator for the Blue Ridge Independent Living Center in Roanoke, Va., and
an ordained minister. |
