A Celebration of Women™

is honored to Celebrate the Life through this Tribute to a Caring, Compassionate, Courageous, Giving and Strong Woman! This Woman’s dying wish was to share her Story so that as many people possible could be educated on the elusive traits of a disease named PML.

The Courage and Strength that she maintained during her experience with this disease is an Inspiration to One & All. In the words of her Father: ‘…before Courtney lost her ability to speak, she asked me ‘Why do bad things happen to good people, Daddy?‘….. and all I could think of to say to her was,”so the ones they leave behind can tell everyone how wonderful they were“.’

WOMAN of ACTION™

Courtney Leigh Hewitt

Courtney Leigh Hewit was nicknamed ‘Corky’ when she was born in 1977 in Orangeburg, S.C., to Reginald Todd and Susan B. Hewitt.

She was welcomed home by her older sister, Heather.

Courtney was educated in the S.C. Public School System

and went on to graduate from,” Walt Disney University,” in Orlando, Florida.

Courtney’s hobbies were music, her favorite was Tony Lucca (former Mouseketeer, collecting, “Super Soap Weekend”, Stars Autographs and Photos (always attended, never missed a single one) her dream was to visit the set of, “One Life to Live,” in New York..sadly it didn’t happen….but I promised one day I would take her children…

She later earned her Degree and was pursuing a career as a Licensed Private Investigator.

Personally…..she enjoyed outdoor activities and especially shared a Love of Butterflies with her Father.

A Gift for Courtney, as Inspired,* ‘…for You Courtney.’

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Courtney grew up, enjoyed the birth of her first two children, Courtney’s first child was Chloe’ in 1997 and Kylie in 1998(same father). After suffering a dissolutionment of that partnership, she carried on…..and Life threw at her what she never expected….the time arrived in Courtney’s mind when she met her ‘to be’ Second Husband, and fell in love in 1999 with, what she believed to be, the ‘Man of her Dreams’.

 

‘….which in fact, turned out to be, her Worst Nightmare!

and the Story began…..’

“Engaged to be married in the Spring of 1999, she was filled with Total Bliss when she also found herself Pregnant. Claudia was born September, 2000 and of course Alexander born 2001……..by the supposedly Mr. Right, who eventually deserted her, she also found out she was HIV positive, during her last pregnancy.” her Dad explains.

 

“A call from her Doctor came in with some devestating news,

….not only was she Pregnant, again; she too, was HIV Positive“.

 

When she told her Fiance and her Family, the nightmare began!

 

After confronting the Man of her Dreams,

He denied EVERYTHING…and abandoned her….

and has later since died of HIV/AIDS, August 18, 2008.

Surviving this Abandonment and living through this newly acquired Condition, Courtney grew into a surviving Single Mother of four, STANDING at a Fork in the Road for her….she continued along.

Courtney was very always very Active at her children’s school, ie., PTA, Student Advisory Council and also involved in their activities.

With three daughters and one son, she was always actively involved in her children’s education, entertainment and instilled in the the importance of a good education.

Since her death, I have stepped into the role she assertively and proudly played in her children’s lives. She is and will be forever remembered as a Giving, Sharing, Caring and Compassionate strong, Courageous Woman!

Courtney’s children staying strong in August 2009…with the help of Grandpa.

In the Fall of 2008 we had just returned to our home in Orlando, Florida,

after attending our oldest daughter, Heather’s wedding, Courtney began displaying signs of a stroke. Much to our shock she was actually misdiagnosed as having had not one, but two strokes. This diagnosis was made based on tests at a local hospital. 

 

The tests were reviewed by her own doctor, with Courtney being turned away, stating her Condition was not HIV related,

although it clearly stated it was indeed PML.

It was this horrendous chain of events, being sent away from one doctor to another doctor, delayed the necessary treatment for Courtney. By the time the realization had set in, by her very own doctor, the irreversible damage of her condition had been done. Courtney lost her ability to communicate, was unable to speak or swallow and was unable to recognize her children.

Courtney’s favorite holiday was Christmas, but Christmas 2009 came and went and she knew not of it’s existance.

 

Two weeks later, Courtney died of PML a rare viral disease caused by the JC Virus, a virus caused by the Chickenpox, which is lying dormant in 85 to 90% of our World’s Population!   

She is and will be forever remembered as a Giving, Sharing, Caring and Compassionate, Strong, Courageous Woman!

Since her death, I have stepped into the role she assertively and proudly played in her children’s lives.

Courtney Leigh Hewitt’s VIDEO:

Progressive Multifocal Leukoencephalopathy

Progressive multifocal leukoencephalopathy (PML), also known as progressive multifocal leukoencephalitis, is a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).

It occurs almost exclusively in people with severe immune deficiency, such as transplant patients on immunosuppressive medications, patients receiving certain kinds of chemotherapy, patients receiving natalizumab (Tysabri)for multiple sclerosis, psoriasis patients on long-term efalizumab (Raptiva) or AIDS patients.

It is caused by a virus, the JC virus, which is normally present and kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus.

Cause

The cause of PML is a type of polyomavirus called the JC virus (JCV), after the initials of the patient from whose tissue the virus was first successfully cultured. Recent publications indicate 39%to 58%of the general population are seropositive for antibodies to JCV, indicating current or previous infection with virus. The virus can cause persistent asymptomatic infection in approximately one third of the adult population, based on viral shedding into the urine from the site of asymptomatic infection in the kidney.

The virus causes disease only when the immune system has been severely weakened.

All checks should have”for restricted research for PML” written on the memo line.

When sending a Donation, please provide your name and address so NORD can return an acknowledgment for Tax Deduction purposes.

For more details about NORD, please go to: http://www.rarediseases.org .

To learn about THIS disease go to: http://www.ninds.nih.gov/disorders/pm…

There is also a Site you can go to to talk to people that have PML or their Care-givers.

Chat Here: http://health.groups.yahoo.com/group/…

People who are unable to get on a Computer, write to:

NORD

55 Kenosia Ave.
P.O. Box 1968
Danbury, CT 06813-1968

PML Diseases – YouTube: http://www.youtube.com/user/PMLdisease

I was one of these people at one time when I was bed riddern for THREE months and given 2 weeks to live. I lost the use of my right arm and hands, the use of my right leg, I could not walk without falling down and hardly talk. It has mostly all come back. I am not 100% but I would say about 95%.

PLEASE, those of you that are Care Givers and Family Members,

LOVE AND SUPPORT are the ONLY things that can help a PML patient today, unless …

Research finds a Treatment or a CURE!

Prior to the advent of effective antiretroviral therapy, as many as 5 percent of people with AIDS eventually developed PML.It is unclear why PML occurs more frequently in AIDS than in other immunosuppressive conditions; some research suggests that the effects of HIV on brain tissue, or on JCV itself, make JCV more likely to become active in the brain and increase its damaging inflammatory effects.

Contributing Causes

There are case reports of PML being caused by pharmacological agents, although there is some speculation this could be due in part to the existing impaired immune response or ‘drug combination therapies’ rather than individual drugs. These include efalizumab, rituximab, belatacept, infliximab, natalizumab, chemotherapy, corticosteroids,and various transplant drugs such as tacrolimus.

Disease Process

PML is a demyelinating disease, in which the myelin sheath covering the axons of nerve cells is gradually destroyed, impairing the transmission of nerve impulses. It affects the white matter, which is mostly composed of axons from the outermost parts of the brain (cortex). Symptoms include weakness or paralysis, vision loss, impaired speech, and cognitive deterioration. PML destroys oligodendrocytes and produces intranuclear inclusions. PML is similar to another demyelinating disease, multiple sclerosis, but since it destroys the cells that produce myelin (unlike MS, in which myelin itself is attacked but can be replaced), it progresses much more quickly. The median survival of patients with PML as a complication of AIDS is 6 months. In 5% of patients, survival exceeds 12 months.

Diagnosis

PML is diagnosed by testing for JC virus DNA in cerebrospinal fluid or in a brain biopsy specimen. Characteristic evidence of the damage caused by PML in the brain can also be detected on MRI images.

Treatment

There is no known cure. In some cases, the disease slows or stops if the patient’s immune system improves; some AIDS patients with PML have been able to survive for several years, with the advent of highly active antiretroviral therapy (HAART).

AIDS patients who start HAART after being diagnosed with PML tend to have a slightly longer survival time than patients who were already on HAART and then develop PML.A rare complication of effective HAART is immune reconstitution inflammatory syndrome (IRIS), in which increased immune system activity actually increases the damage caused by the infection; though IRIS is often manageable with other types of drugs, it is extremely dangerous if it occurs in PML.

Other antiviral agents that have been studied as possible treatments for PML include cidofovir and interleukin-2, but this research is still preliminary.

Cytarabine (also known as ARA-C), a chemotherapy drug used to treat certain cancers, has been prescribed on an experimental basis for a small number of non-AIDS PML patients. It is reported to have stabilized the neurological condition of a minority of these patients.One patient regained some cognitive function lost as a result of PML.

In June 2010, the first case report appeared of a PML patient being successfully treated with mefloquine. Mefloquine is an antimalarial drug that can also act against the JC virus. Administration of mefloquine seemed to eliminate the virus from the patient’s body and prevented further neurological deterioration.

I, as her Father knew then and there, I had to write and share her Amazing Story with the World!

“Courtney’s Story,” is a true story of my daughter Courtney’s battle with PML,

a very rare and seldom heard of viral disease that affects the brain.

The humble comments of this Father, in his own words: “Just a simple man, living by simple means…doesn’t take much nor do I expect much! I am and always have been a firm believer…” We get back what we give to others and then some, by helping or reaching out to our fellow man. Many have attained national notoriety by doing just that! Whether it’s good, bad or indifferent, my friend, we all have to answer to only One….so, be good, kind and generous to one another and enjoy each day to the fullest!

Always remember to Pay it Forward when you can……..”

Contact by Email: [email protected]

He only asks:

“I have sent a Press Kit to the Senior Producer at ABC’s , “The View”, they should have received it today……I pray they are interested…..” so, anyone reading this connected to the VIEW, please take into consideration this very important Story. I, as her Father knew then and there, I had to write and share her Amazing Story with the World!

‘AVERTing’ HIV & AIDS during Pregnancy HELPLINE SITE : http://www.avert.org/pregnancy.htm

A Celebration of Women™

sends our Love & Prayers for this Family, honors the efforts of her Dad, Todd R.Hewitt

and trusts that this Amazing Young Women is here with us in Spirit.

Fly Home, Sweet Butterfly!

~ SPEAK OUT LOUD ~