WOMAN of ACTION™ – Courtney Leigh Hewitt


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.’

______________________________________________________________________

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: com4tsweets@aol.com


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 ~

 

Comments

  1. Please know after being tested for this virus by my RN before going on a medication for MS, I understood parts of it, but this really goes into deeper understanding. Although I was on a drug after 6 months of waiting, working through the process of understanding that I could go on it for at lest 2 years or up to 2 years after only 2 infusions because of blood testing, I was taken off the drug due to severe liver elevations and wanting to do as much as I can holistically for my MS and it being manageable, I am consistently diving into the understanding of any and all diseases that were in my family.

    I have a few friends that get Shingles, I have been blessed without this, Chicken pox I do not know as of yet but thank you for the reminders of the pieces that I continue to learn why did I test positive to the virus.

    Thank you for the awareness

    Tina

    • Tina, I just wanted to say thank you for your post. I too as a child had the Chickenpox…I also have had and almost died from the Shingles in 2005..so I know without a doubt the JC Virus is indeed present within my body and makes me highly susceptible for PML. in a matter of time. That’s why my organization is so important and awareness and testing is the answer.

  2. This blog is a beautiful way of keeping a loved one memory alive. When a disease strikes we all have to be fighters, scientists, mothers and fathers at the same time. It is not easy, especially with a terrific disease like PML. I appreciate your effort for keeping this blog up and also for spreading awareness of pml, so that others might learn and be able to get inspiration and strength from this tragedy.
    Accept my sincere condolences.

    John Snow.

    • John,
      Thanks for your reply and please feel free to share Courtney’s Story of PML with those you love!

    • Susan,
      Thanks for your kind words and support. Tes indeed PML is an awful disease and everyone needs to be educated. I hope you will read and share Courtney’s Story with everyone you love. Catherine Anne Clarke the Founder of this site has been instrumental in this much needed awareness around the world!

    • John, you are so right! Thank you for your comment and please visit our site for updates!

  3. Susan Connors says:

    I am so very touched by your daughter’s story. You are keeping her alive in the hearts of those who never knew her. I’m sure you are fulfilling what I believe would have been her wish…to let the world know of PML and help prevent the other mothers being taken away from their children at such a young age.

    I am so sorry for your loss.

    Susan Connors

  4. Thank you Todd for all of your hard work in getting the word out about PML and for helping others to be informed. All of us who knew Courtney were/are very blessed. I know Courtney is smiling down on you saying, thats my Dad. Love to you all

  5. Thank you so very much for your courage in publicizing Courtney’s fatal disorder, Todd. I am so terribly sorry that you lost your wonderful daughter.

    PML is a devastating rare disorder that can affect anyone with an immune-compromising condition or who is taking medications that lower immunity. It is often stealthy at first, coming on insidiously with vague symptoms, then suddenly becoming overwhelming. It can be mistaken for a stroke, although the x-ray findings (brain MRIs) are very different.

    In many cases, the development of PML is the first and only indication that someone is HIV-positive–at that point the person has full-blown AIDS, with a CD4 count that is very low, way below 100. However, in Courtney’s case, already knowing that she was HIV-positive, an opportunistic infection like the one that causes PML really should have been a number one concern by her doctors.

    The young man in the video you posted, whose name was Bobby, survived a horrendous experience with PML. He contacted NORD after he started to recover. Bobby did everything in his power to become a PML activist, contacting every TV talk show, sending letters to everyone in Congress, over and over again, to no avail. His greatest contribution to this cause was that very powerful and personal You Tube video that you have placed on this site. As he mentioned with such heartfelt sadness, it took him quite a while to summon the emotional strength to record that video, but he did it anyway, in an effort to raise awareness.

    Todd, you have no idea how happy it would make Bobby to know that not only is someone else (you!) trying to raise awareness about this dreadful disorder, but that you used HIS video! I can just see him smiling about it right now! We became very, very close friends–once Bobby’s strength returned sufficiently, he actually came out to visit us at NORD (from Colorado to Connecticut!). He was such a truly kind and sweet man (and very, very feisty!) , and he eventually became like a family member to me and my husband. He was like the brother I never had.

    Unfortunately, Bobby succumbed to a virulent form of lymphoma three years after winning a horrible battle with PML. He was 43 at the time of his death on March 17, 2009.

    Please keep your efforts going strong–for Courtney, for Bobby, and all the others who have been devastated by–or have lost their lives–to this monster, PML.

    If you think that I can ever be of some help in your cause, please don’t hesitate for a moment to contact me at NORD–rn@rarediseases.org

    Thanks to you–and your strength and courage to tell Courtney’s story, people with PML and their loving, often heart-broken families, finally have a voice!

    With warmest regards,
    Stefanie Putkowski, RN
    NORD

  6. Thanks so much for sharing Courtney’s touching story with all of us Todd. I hope you don’t mind if I pass this link on to others? You and Catherine did a lovely job putting this website together to educate us and your words moved me to tears. Your love for your daughter and her children shines through, that’s for sure. I often think about how many times I’ve been told things happen for a reason yet at the time of the pain it’s often hard to figure out why and that part comes later. Thank God I can’t imagine the loss of a child, but I have the utmost respect for the kind of strength it takes to go on each day. My parents have never been the same having lost my brother to an accidental shooting at the age of 13 and we miss him daily. After that tragedy came my bone cancer ordeal and Catherine put this together; Please feel free to share with anyone you know touched by cancer. https://acelebrationofwomen.org/?p=4179 God Bless.

  7. This is a very important message that needs media attention. People need and have the right to be educated on this crippling disease. You folks in the news media need to carry this to your viewers. This is worthy of shows like” The View” could at least give it some air time..It’s a matter of someone living or dying..Please help my frien Todd get this word out to the public…T.C. in South Carolina.

  8. Heni Racik

    To whom it may concern:

    I am blessed to have seen Courtney’s Story it is an eye opener for me and I have learned something of great importance, I would like to thank the brave man that had to endure the hardships of reliving the episode so others can be educated from one man’s daughter ‘s life ordeal.

    God bless the chi…ldren Courtney has left here on earth, and I hope her soul lives forever in through her children … here is my story that is evolving and I would love to take Courtney’s story to educate others on our World Tour.

    http://www.thevelvetevolution.weebly.com

  9. What a wonderful story to share with the world. Thank you for bringing this disease to our attention. God bless you and your family.

  10. this is a truly amazing story that you have written in behalf of courtney. i admire you for doing a great job in letting the entire world know about the ups and down of this disease. love you reggie and ur entire family. keep up the great work that ur doing

  11. Michele DeVille says:

    This is a beautiful and very important tribute to an amazing and strong woman who carried herself with grace and integrity. We need to all share and inspire eachother in every way we can and this story is one that needs to be heard. Thank you for sharing her with us and blessings to you and her children.

  12. Thank you for sharing such a beautiful tribute to Courtney, I know that there is much love there, & she will alway’s be with you and her children.
    I to have a great feeling for butterflies. Thanks again Todd..for sharing. Love, Jo

  13. Aloha Todd!

    Thanks for posting Courtney’s Story.

    Ken

  14. Rhonda B says:

    I knew Coutney and she was a special person and I am friends with her father. The book is a great read about a father’s love for his daughter, it’s a must have for any parent. I hope by using websites like this that you will be able to spread the word about PML and more education & research can go into helping others.

  15. This is such an amazing story of great courage and one that will live on and on and of great help to all that may face similar challenges. The family must be very proud of there great daughter.

  16. A beautiful tribute to Courtney and important story to be heard.

  17. Alice Weeks Huff says:

    This story was very touching and brought tears to my eyes! Everyone should be aware of PML and the symtons of it and how it can affect the body. I think that Todd is doing a wonderful job as a Grandparent taking care of his four beautiful grandchildren and they are lucky to have him in their lives. He has taken on a challenge that most men would run from. Todd I wish you all the luck in the world and next time you come to Orangeburg, I want to meet these four beautiful children and sit down and have a cup of “Folgers” with you and talk about this story. Keep in touch and if I don’t answer right back, you know what I have going on in my life at this time with my daughter in Texas, but you and those grandchildren are always in my thoughts and prayers. Love to you all! Alice

  18. Tonia Tecce :

    “A beautiful story. “

  19. After hearing the gentleman’s video above, then reading Courtney’s Story, I am more enlightened about this devastating, rarely-heard-of PML and JC Virus. I was moved to tears listening and reading their stories. Todd, I am humbled by your dedication to get the word out, so others don’t suffer the heartbreak you and your family have endured. You are truly a devoted father, even after suffering a loss that most people only hear about. God bless you, Chloé, Kylie, Claudia and Alex forever.

  20. Kristina says:

    What an amazing thing you are doing. Its beautiful yet so tragic. I know that so mauy people will be touched by this, and educated as I have been. Theres a reason for all of this. I know you know that.

  21. Pamela Hughes says:

    Pamela Hughes

    I just finished viewing this.

    What a great supplement to your book.

    The heightened awareness your efforts bring about this treatable condition is a great tribute to Courtney.

    Countless lives can potentially be saved through your unwavering …commitment to educate the need for early detection & intervention.

    PML doesn’t have to be the end.Patients like Courtney don’t fit the typical clinical diagnosis doctors expect or assume. This means patients & families have to press physicians to think outside the box.

    Again, PML doesn’t have to be the end.

  22. April Gibson

    I watched this, this is the most heartbreaking, scary, enlightenting, unbelievabel story.

    .if you get a chance, take a look, let the story sink into your heart and become aware of this horrible disease

    that is out there but rarely spoken about, it will be worth your time.

  23. When my daughter lost her voice, I knew i had to lend her mine and some how, some way, “Raise Worldwide Arareness of PML.” I thought to myself, how can I accomplish this, just one man do this alone. I soon realized I wasn’t alone, I had my family by my side. Her children are my inspiration and are very interested in my cause as we share their mother’s amazing story with readers around this great big beautiful world.we all live in.
    I hope and pray that you share this article with as many people as possible and will join in our quest.

    Reginald Todd Hewitt
    Chloe’
    Kylie
    Claudia
    Alex

  24. Crystal Hewitt says:

    I absolutely love this page……I learned a lot just from reading this….I will always pass this information to friends and family members to keep my cousins spirit ALIVE and story told…

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