Tragedy fuels Reginald Todd Hewitt.
After losing his daughter, Courtney, to a rare disease, progressive multifocal leukoencephalopathy, PML, Hewitt has made it his goal to make sure people are educated about the disease and get tested for the John Cunningham, JC, virus.
The day Courtney was diagnosed with PML in 2008, her father started The Courtney Project, a non-profit that seeks to educate people about PML and the JC virus. The organization became an official 501c3 nonprofit in 2014.
PML is a progressive disease, usually fatal, that damages the white matter of the brain in multiple locations. It is a rare disease but develops from a common virus known as the JC virus.
Most people who have had the chicken pox or the shingles carry the JC virus.
The JC virus lies dormant in the body and only develops into PML if the immune system is weakened. The immune system can be compromised in many ways, such as multiple sclerosis, Alzheimer’s disease, HIV and certain cancers. Organ transplant recipients are also susceptible.
Courtney was diagnosed with HIV in 2000, and the PML symptoms appeared after a mild case of shingles in 2008.
Hewitt’s experience with PML started in 2008, when Courtney started displaying stroke symptoms. She was just 30 years old.
Her doctor told her to go to the emergency room. On Oct 29, 2008, she was diagnosed with PML.
The family didn’t get much information about it at the hospital — only to follow up with her infectious disease specialist. At that appointment, her doctor didn’t even know what PML was.
“That’s what really got me going,” Hewitt said.
After researching PML online, the doctor told Courtney she would be fine in a few weeks. Then he referred her to a neurologist.
The neurologist told her she had had two strokes, even after he had read the report on PML from the hospital. They began to treat her as a stroke patient and not a PML patient.
It wasn’t until Hewitt was at his own doctor for his annual checkup that he realized the true severity of Courtney’s diagnosis. Hewitt, without telling his doctor he was describing his daughter, began to relay her symptoms.
“Before I could even get the symptoms out of my mouth, he said, ‘This poor woman is going to be dead in six weeks,’” Hewitt said. “He didn’t know who I was talking about, so you can imagine how I felt.”
His doctor knew of PML.
A few follow-up appointments confirmed the diagnosis.
There is no cure to PML, but if it’s caught early, patients can live with it. But at that point, it was too late for Courtney.
She regressed quickly and died on Jan. 13, 2009. She left behind four children.
THE COURTNEY PROJECT
Hewitt is now the guardian of Courtney’s children.
He started the organization to raise awareness of PML and the JC virus. He encourages testing so people know they have the virus and take steps to prevent immune systems from becoming compromised.
The organization also produces videos and education materials to raise awareness of PML and encourage testing of the JC virus.
In light of the organization’s work, governor-issued proclamations have been made by 27 U.S. states. The statement encourages residents of the state to be aware of PML. The organization aims to have a proclamation from every state.
But that’s not Hewitt’s main goal.
“As blessed as we are to have those, I’d much rather have a check for funding for what we do,” Hewitt said.
The organization offers services to PML patients such as transitional housing.
This housing allows people diagnosed with PML to transition to life with PML. They get support from Hewitt, who has walked the journey.
“I’m not a doctor. This is personal experience. I’ve lived it, and I’ve walked the walk,” Hewitt said.
Hewitt hopes to expand the housing to accommodate more people, but funding is needed for that. The organization has more people interested in housing than it can currently hold.
The organization’s reach stretches across the nation.
Four years ago, Debbie McNelly, of Delaware, found out her daughter, now Victoria Barry, had been diagnosed with PML. She had no idea what it was.
“I had to Google my brains out to find out any information about it,” she said.
Through her research, she found The Courtney Project and connected with Hewitt. Suddenly, she didn’t feel so alone.
McNelly was able to find a hospital and doctors who knew how to treat the disease. At the time, Barry was given a month to live. But four years later, she is living a full life with the disease. She recently got married.
McNelly and Barry now volunteer to support The Courtney Project in their state.
IF YOU GO
PML AWARENESS 5K RUN, WALK AND ROLL
WHEN: 7 a.m. Saturday, Oct. 31
WHERE: Olympia High School Titans baseball field, 4301 S. Apopka-Vineland Road, Orlando
DETAILS: The $15 registration fee includes a T-shirt.
REGISTRATION: the-courtney-project.org or (321) 388-1952
HOW CAN I TELL IF I HAVE THE JC VIRUS?
The JCV Antibody ELISA test, a test your doctor can perform, can tell you if you’ve been exposed to the JC virus.
I HAVE THE JC VIRUS. HOW DO I AVOID PML?
Your doctor should know steps you can take for treatment, especially if you have an illness compromising your immune system, such as HIV or MS. If your immune system is strong, the JC virus will not affect you as long as your immune system remains healthy.
Research drugs to see if PML is a side effect. Many drugs do not list “PML” as a side effect, but that doesn’t mean it isn’t. Look for the words “rare brain infection” in place of PML.
Contact Jennifer Nesslar at [email protected].