CONCH COLOR of the Florida Keys share this very important true story …

 

Father turns anger over daughter’s death… into mission to educate others about PMLTodd 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 former Orangeburg resident’s daughter, Courtney Leigh, died of progressive multifocal leukoencephalopathy, a condition that even the specialists treating Courtney weren’t aware of. “Her doctors didn’t know what PML was. They hadn’t even heard of it,” 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 now lives in Orlando, Fla., and is caretaker of Courtney’s four children.

According to the National Institutes of Health, PML is caused by the reactivation of a common virus in the central nervous system of immune-compromised individuals. Polyomavirus JC – often called JC virus – is carried by a majority of people and is harmless except among those with lowered immune defenses.
While it is most common among individuals with AIDS, 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 sarcoidosis.

“In Courtney’s case, she was HIV- positive, but she did not die of AIDS. She died of PML,” 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 has an Internet radio talk show, where he shares information and education with PML patients and survivors, and HIV patients and their family members.

“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, and the more and more I read, the more frightened I became. She was the picture of health. She had just returned from South Carolina. … Two weeks later, she started showing light symptoms and it just snowballed. That was on Sept. 29, and it continued until two weeks before her 31st birthday in October. 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 school activities, extracurricular activities like PTA and the student advisory council. She was very big on education.”
Two academic scholarships have been set up in Courtney’s name – the local Courtney Hewitt Scholarship Award, which was started by a Cordova couple, and the Courtney Leigh Hewitt Scholastic Achievement Award, which is given to eligible students at Orlo Vista Elementary School in Orlando.

Hewitt said he works to keep Courtney’s memory alive among her children. “Courtney is actually buried in Orangeburg in Memorial Park Cemetery on Broughton Street. We can’t visit the cemetery like we would like to, but we have a prayer garden in our backyard,” he said. “It’s been a big help for the children, as far as therapy.”

Hewitt said he will continue to educate and spread hope with his message. “A movie based on Courtney’s life is currently in development with Checkmate FILMS, an independent film production company based in Orlando, which has already optioned the story rights and hired a team of writers to pen the screenplay,” he said.

COURTNEY’S STORY:

By: Conch Color

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