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News from PhillyBurbs.com feb. 18, 2007
Burlington County Times
His campaign targets rare illness
By ED MOORHOUSE
Burlington County Times
MEDFORD — The cost of postage stamps is getting a little high for
Jamie Smith, but he doesn't seem to mind. He has a few more letters
to write.
The 16-year-old Shawnee High School student estimates he has sent
123 letters to state lawmakers, urging them to pass a bill that
would designate the third week in September as Mitochondrial Disease
Awareness Week.
“I really would like to see more research done to find a cure for
mitochondrial disease,” Jamie said Thursday. “I don't want (the
research) to stop with just finding a way to slow it down.”
Jamie was diagnosed with the rare disease in 1999.
According to the United Mitochondrial Disease Foundation,
mitochondrial diseases result from failures of the mitochondria,
which are found in all human cells except for blood cells and are
responsible for creating more than 90 percent of the energy needed
by the body to sustain life and support growth.
The disease causes the mitochondria to malfunction. When that
happens, less and less energy is generated within the cell. If the
process is repeated throughout the body, whole systems can begin to
fail.
The diseases are common in children and cause the most damage to the
cells of the brain, heart, liver, skeletal muscles, kidneys and the
endocrine and respiratory systems, according to the United
Mitochondrial Disease Foundation.
The disease once caused Jamie to have between 100 and 300 seizures
per day. It affects his ability to eat and he receives supplemental
feedings through a tube. His immune system can no longer make
antibodies. He is hospitalized every 21 days to receive intravenous
immunoglobulin infusions, which give him an artificial immune
system. He takes 24 different medications every day.
Jamie is campaigning to educate the public about the disease.
“In my opinion, it's overlooked because there is a lot of
information out there about other diseases, but with mitochondrial
disease, there's practically little or no information about it. It
means a lot to me to know that I have the ability to educate others
about the disease.”
Jamie said although his condition is improving, he knows other
children who have the disease are not.
In a letter to state senators and assemblymen, Jamie wrote,
“Unfortunately, others with this debilitating disease are not doing
as well. I am sad to report that one of our residents passed away
last year as a result of this disease. He was only 7 years old. I am
also sad to report that more and more children from New Jersey are
being diagnosed with mitochondrial disease.”
Eighteen-month-old Joshua Garman of Lumberton was diagnosed with the
disease about six months ago at the federal Centers for Disease
Control and Prevention in Atlanta. Supporters of the family
scheduled a weekend fund-raiser to help Joshua's parents, Hugh and
Nicole Garman, to pay his medical bills.
Jamie has encouraged friends, family members and teachers to write
letters. The response surprised him.
“It makes me feel very happy that there are all of these people who
are willing to help get legislation passed.”
Jamie said his efforts won't stop when his wish for an awareness
week becomes a reality. He wants to keep lobbying for more research,
education and fund-raisers.
When his bill finally is passed, Jamie knows exactly how he'll
celebrate.
“I would love to throw a huge party. It's going to be one big
fund-raiser,” he said.
E-Mail: ED MOORHOUSE
http://www.phillyburbs.com/pb-dyn/news/112-02182007-1301040.html
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