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Courtney's Story|Courtney Project - Exploring A Life with PML
by Todd Hewitt

What is it and where does it come from?
Todd Hewitt is on a mission to spread the word about a little-known disease that
took the life of his beloved 31-year-old daughter two years ago.
The Orlando resident's daughter, Courtney Leigh Hewitt, died of Progressive
Multifocal Leukoencephalopathy, a condition that even her Infectious Disease
Specialist treating her at the time, didn't know existed!.
"Her doctor didn't know what PML was. He hadn't even heard of PML," Hewitt
said. "She was literally passed from one doctor to another. ... Precious time was lost,
and she went without the proper medication until it was too late. Her condition was
irreversible."
"Since her death, I have written her story entitled ‘Courtney's Story' to raise
Global Awareness of PML, the rare viral disease that claimed her young life," said
Hewitt, who is now Legal Guardian of Courtney's four  small children.
According to the National Institutes of Health, PML is caused by the reactivation
of a common virus that lies dormant in our bodies after having had the Chickenpox!
The virus waiting to be unleashed like a savage beast in 85 to 90 % of our World's
Population! It attacks the central nervous system of immune-compromised
individuals. The JC Virus, the creature lies in wait inside our bodies until our immune
systems are compromised or weakened.
While it is common among individuals with HIV, the NIH says it can also affect
organ transplant patients, people undergoing chronic corticosteroid or
immunosuppressive therapy, and individuals with cancer, such as Hodgkin's
disease, lymphoma and other diseases you would never even think of!
"In Courtney's case, she was not gay. She was a heterosexual who sadly was
infected by her fiance in 2000. PML does not discriminate, knows no color, race or
national origin! The fact that she was HIV-positive increased her chances of
contracting PML. Yes, she as a child had the Chickenpox. The odds were definitely
not in her favor," Hewitt said. "As far as the disease itself, there is no cure for it, but
if PML is detected in time, it can be treated and lives can be prolonged for years, just
as in the case with HIV/AIDS.
"Since my daughter died, I've devoted every ounce of my being to research,
writing articles and blogging."
Along with his book,  Hewitt travels extensively speaking to groups about PML and how it changed his life!
"I wrote," Courtney's Story", to promote and raise awareness not just here in the U.S., but globally," he said. "The JC virus lies dormant in
85 to 90 percent of the world's population. That's why it's important. When the immune system is weakened or compromised, you become
susceptible to acquiring PML."
The NIH says that with current HIV therapy, which effectively restores immune system function, as many as half of all HIV-PML patients
survive, although they sometimes have an inflammatory reaction in the regions affected by PML. The symptoms of PML are the result of an
infection that causes the loss of white matter - which is made up of myelin, a substance the surrounds and protects nerve fibers - in
multiple areas of the brain.        
Without the protection of myelin, the NIH says nerve signals can't travel successfully from the brain to the rest of the body. The most
prominent symptoms are clumsiness, progressive weakness, and visual, speech and, sometimes, personality changes. The progression
of deficits leads to life-threatening disability and death over weeks or months.
"When Courtney started showing signs and symptoms, we thought she had a mild stroke," Hewitt said. "She was a smoker and had slight
symptoms that mirrored a stroke: a tingling sensation, numbness in her finger and left foot. ... We went to the doctor, and he did an MRI
and a CT scan and diagnosed her with PML.
"I started researching on my own and the more I read, the more frightened I became! To look at her, she was the picture of health.
She was the picture of health. Her 31st birthday on October 22, still appearing to be perfectly fine was happy and full of joy! By Jan. 13, she
was dead."
The NIH reports that the best available therapy is reversal of the immune-deficient state. In the case of HIV-associated PML, immediately
beginning anti-retroviral therapy will benefit most individuals.
Hewitt said he has turned his initial anger over his daughter's death into a mission to educate others. He considers his 82-page book a
positive start.
"Courtney was very caring, loving and compassionate," he said. "She was studying to become a private investigator. She was involved with
her children's school activities, extracurricular activities like PTA and the School Advisory Council. She was very big on education."
Two Academic Scholarships have been established in Courtney's name and the," Courtney Leigh Hewitt Scholastic Achievement Award",
which is given to students at Orlo Vista Elementary School in Orlando. This very special award is given at the end of each school year by
her father to five fifth graders (one from each class) with the highest GPA.
Hewitt said he works to keep Courtney's memory alive among her children.  "Although Courtney is buried in Orangeburg, South Carolina
which makes if difficult to visit her grave as often as we would like, we have a lovely prayer garden in our backyard," he said. "It's been a big
help for the children and for me."

Anyone who would like to join me in in my quest to raise global awareness of PML, please email me or write to:

The Courtney Project
434 North Normandale Avenue, Orlando, Florida 32835
courtneyproject@aol.com    or call me direct: 321-388-1952

Courtney Lost her Voice to PML, Won't You Lend Her Yours?

"A movie based on Courtney's life is currently in development! A Celebration of Women_Founder and CEO_ Catherine Anne Clark and
Checkmate FILMS, an Independent Film Production Company, which has already optioned the story rights and hired a team of writers to
pen the screenplay," he said.


Read more: http://
www.acelebrationofwomen.org

Courtney Leigh Hewitt_Woman of Action
October 22, 1977_January 13, 2009
.

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