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On February
20, 2008, The Neurology Department at Cook Children's Hospital
in Fort Worth, Texas held a special conference to discuss Jessie
Hall's case. She had been having unstoppable seizures, abnormal
brain activity, and a lesion all focused on only one side of
her brain. Her arm, hand, and eyes shook continuously with a
continuous seizure that no medicines could stop. Under the care
of Neurologists Dr. Monica Chacon and Dr. Saleem Malik, they
presented the case to the entire neurology and neurosurgery
staff at Cooks, and after 7 baffling and confusing months, they
finally had a diagnosis. A diagnosis that none of them had made
before, and one that none of them wanted to make again.
Jessie, at 5 years of age, was diagnosed with Rasmussen's Encephalitis.
Rasmussen's Encephalitis is an extremely rare and cruel brain
disease that almost exclusively attacks little kids; usually
kids like Jessie, with no previous health problems. A happy,
healthy, outgoing little girl that liked to sing, dance, paint,
play dress-up, read, and go to Kindergarten at Stuard Elementary
in Aledo, was now fighting for her life. In fact, other than
the constant seizures in her hand, arm, and eyes, you might
not know that this disease is relentlessly attacking the right
half of her brain.
There are no medicines or treatments that can stop Jessie's
seizures, and if they are not stopped, the disease will progress
with catastrophic results. The only treatment for this disease
is a radical brain surgery called a hemispherectomy. They will
have to remove the entire right half of Jessie's brain. Jessie
will fly across the nation to Johns Hopkins Hospital in Baltimore
Maryland to have this procedure done as soon as it can be scheduled.
Under the direction of Dr. Eileen Vining, Neurologist and her
assistant Diana Pillas and under the surgical direction of Dr.
Ben Carson (Director of Pediatric Neurosurgery) and with the
help of hundreds of other doctors and staff, Jessie will have
half of her brain removed.
Agreeing to this surgery is the hardest thing that any parent
will ever make. You see your daughter getting on a bus to go
to school or playing on a playground, as you set up a surgery
that sounds like something our of a Frankenstein movie. No parent
should have to make that decision, and ultimately, it is an
"elective" surgery as the hospitals would say.
The amazing thing about this surgery, is that Jessie has an
incredible chance of recovering and going on to lead a normal
life. Sounds impossible doesn't it. It's not, however, because
of a thing called "Elasticity", and kids have lots of it in
their brain. That means that their brains are so young and pliable,
that one side can actually take over some of the function that
the other side was doing. A surgery like this would probably
kill an adult, but kids have the chance to recover amazingly
well. There is not a lot of research on it however, because
not many of these surgeries get performed each year.
Jessie's chances of a miraculous recovery are even better, because
she still is in such good shape. She still walks without problems
and has lost only minor cognitive skills. Many children who
undergo this surgery have much more severe mental and physical
problems, so tracking post-surgery progress is difficult. Jessie
has a very good chance to walk after this surgery.
So this is not a story of tragedy, but a story of hope and the
miracles of God and medical science. This is the story of a
brave little girl who may just defeat a disease that is threatening
to take her life.
Update as of 10/15/2008
Today, Jessie is 4 months post surgery. She is in a regular
1st grade class and doing extremely well. She is walking, swimming,
and can do just about anything that any other child her age
can do. She walks with a limp, and a brace on her leg. Her left
arm and hard have some use, but not fine control. Her personality,
memory, and love of life has remained intact. We praise God
daily for the miracles that we have seen.
Because of this trying time in our lives, we have started a
foundation called "The Hemispherectomy Foundation" to help other
families that are going through this difficult time. http://www.hemifoundation.org
And her whole story can be found at: http://jessiekelley.blogspot.com/
Thanks!
Cris Hall
VP - The Hemishperectomy Foundation
US 817-307-9880
PO Box 1239
Aledo,Texas, 76008 U.S.A.
Posted: October 21, 2008
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