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Author Topic: Courtney’s Story  (Read 8598 times)

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Courtney’s Story
« on: February 16, 2009, 02:06:06 pm »
 Courtney’s Story   
                                                  Born 10-22-77.…………Died 01-13-09
Courtney Leigh Hewitt is my daughter and she was 31 years old when she was taken from us prematurely, leaving behind, not only me, but her mother Susan , her loving sister Heather and her four beautiful children, Chloe’ age 11, Kylie age 10, Claudia age 8 and Alexander, 7, who absolutely adored their mother.
 Now, comes the grieving,  the mourning and yes, somehow the mending of  all the broken hearts of everyone who knew and loved her..

It was not her choice or wish to leave this earth at such an early age. Although, Courtney was diagnosed with HIV in 2001 she was compliant with her medicines and doctor’s appointments or at least we thought she was until October, 2008, when showed some signs and symptoms of some one who had suffered a stroke. This being the case, we went to a local hospital where an MRI and a CT Scan were performed. A day or two after we contacted her HIV doctors to inform them of her change in health and scheduled an appointment, took the Tests to them for perusal. We were informed then that she had not been compliant with her HIV meds or scheduled appointments and due to the HIPPA Privacy Act Law, we could not be notified.  Her last appointment was in the Spring of 2006. Her doctors told us her problem symptoms were apparently Neurological and not HIV related and suggested we consult with a Neurologist.  So, our quest which led us down this tragic journey began……after what seemed like an eternity , we were able to find an establish and put our faith, so we thought in a doctor, who assured us and convinced us our precious baby girl Courtney ad indeed suffered not one, but two strokes, the second more severe than the first!

He, the Neurologist, having Courtney’s medical history and aware of her HIV status, assured both Courtney and I that it was indeed strokes she had suffered and her condition was not related to HIV.
This diagnosis was made by the Neurologist at the first examination at which that time he performed some in office test to confirm to us his diagnosis of the stokes. Why would we question him, the professional? We had no reason not to do anything less than put our faith and trust in him as her caregiver. Especially after her HIV doctors assured us it was not HIV related ,but Neurological. He even wrote her a prescription for numbness of her left foot, which we had filled at our local pharmacy and started taking immediately and was scheduled a follow-up the next week and asked to bring the film from the  original MRI and CT Scan we had done several weeks prior to our second appointment with him.

The next week (the date of the second appointment) as we are about to walk out the door of our home, the phone rings and his office manager states, we can not see Courtney Hewitt, without a referral from Medicaid. Keep in mind he had already accepted and examined and diagnosed and written her a prescription the previous week and was treating her as a stroke patient.

After another week goes by, we do as he says, schedule an appointment, carry with us what he had requested (MRI and CT scan)  and the referral. He greets us, examines Courtney again, performs some more in office test and then again re-assures both Courtney and I, she suffered not one but two major strokes after viewing the MRI and CT Scan reports. He writes a prescription for more test to be performed, so we took them to the Hospital for scheduling and was told there that unless we took the prescription back to the him or called him and ask him to fax over the prescription to the Hospital with the word STAT written on it, it would be 15 more days before they could schedule her test.

I phoned his office immediately, informed him of what the Hospital was asking of him, so we could get the test (he had requested) done ASAP, he became angry and ugly and shouting to me that he had never heard of such a thing. I politely handed my cell phone to the lady at the scheduling desk and she handed it back to me, stating he was rude and ugly and wouldn’t cooperate and hung up the phone on her.

I immediately called him back and calmly asked him, to please, please fax the prescription to the Hospital with what they had asked (a simple four letter word STAT) so that we could have the tests he had requested done so we could get the proper care for Courtney. “His exact words were, I am going to fax this prescription for your daughter, but do not bring her back to me, because I refuse to see her again as a patient.
Well, here it is February 10th, 2009 and needless to say he never faxed the prescription!!!!
Later that afternoon, I took Courtney to Florida Hospital South in Orlando.

There, a few days later, another Neurologist performed another MRI and CT scan, much to our Shock and Amazement, the Neurologist assured us, there was never a Stroke and she was diagnosed with PML (HIV related) not quite understanding why her HIV doctors didn’t realize this.
 PML , we certainly never heard of this awful HIV related disease until now…………..down below, I ask of you, if you can, please read carefully as we have and try as difficult as it may seem to you,  put yourself in our shoes, as parents and if Courtney were your child……How could this happen?
Keep in mind, when her HIV doctors realized it was PML and the HAART meds referred to in the data below were necessary if there was any chance for Courtney, not to beat the disease, because we know there is no cure, however, with the meds, had they been administered in a timely manner (at the on-set) and not at the middle or ending stages of the disease, the chance we had, that Courtney had and Chloe’, Kylie, Claudia
and Alexander! We know God only has the answer, but we want to know why, the misdiagnoses were made
And How the her HIV doctors could not have caught this in a more timely manner, so that none of this would have had to happen ,at least  so prematurely.

Progressive multifocal leukoencephalopathy

Progressive multifocal leukoencephalopathy (PML), a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation (-itis) of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal). It occurs almost exclusively in people with severe immune deficiency, e.g. transplant patients on immunosuppressive medications, or AIDS patients.

The cause of PML is a type of polyomavirus called the JC virus (JCV), after the initials of the patient in whom it was first discovered. The virus is widespread, with 86% of the general population presenting antibodies, but it usually remains latent, causing disease only when the immune system has been severely weakened.
About 2-5% of AIDS patients develop 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.

 Disease process (No one should watch a loved one go through this)
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 10% of patients, survival exceeds 12 months. The longest reported survival is 92 months from the onset of illness.

 Diagnosis (This was not done in a timely manner)
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 (Please Read this Paragraph Carefully)
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).

As I said, only God   has the answer to this question. Had Courtney been diagnosed correctly  and her HAART meds started at the time she just had a slight numbness and tingling in her left foot and hand….. We watched her from day to day, everyday something new, from not being able to speak, swallow her meds, unable to communicate, not even by writing, to finally her sight being robbed from her, unable to ever see the faces of Chloe’, Kylie, Claudia and Alex’s face again! The odds were 50/50 that it would have slowed down the process and  I as her father, Chloe, Kylie, Claudia and Alex would have had Christmas and New Years with Courtney for possibly two more very special and cherished  years and not suffered through the agonizing past four months. We all know that long term we would have had to give her to God one day and the odds as they were 50/50 were drastically decreased and taken from us. I say to you ,the Neurologist for your mis-diagnosis and negligence and you the Primary Care Physician for refusing to write the order for the peg tube (feeding tube) for our precious Courtney, “ Yes, she was an HIV patient, and yes people live for 20 years or more with the virus.”

 What is really sad about all of this, is the fact that the HIPPA Privacy Act, if tweaked just a little,  this could all been avoided and we would still have our  daughter and loving mother of four small children still here on this earth with us!

Reginald T. Hewitt
Orlando, Florida 32835
321 388 1952

edited by Ann to change the title of the thread
« Last Edit: February 17, 2009, 10:22:47 am by Ann »

Offline aztecan

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Re: Life expectancy after AIDS
« Reply #1 on: February 16, 2009, 05:28:17 pm »
Dear Reginald,

I am truly sorry for the loss of your daughter, especially in this manner .

I have seen PML and its affects and there are several members here who have had it.

There is little I can say to ease the pain you are now feeling.

Please know you and your family, especially your grandchildren, will be in my thoughts.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Ann

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Re: Courtney’s Story
« Reply #2 on: February 17, 2009, 10:34:51 am »
Hello, Reginald, and welcome to the forums.

I removed your post (and a response you got) from a thread in the Long Term Survivors forum and placed it here, in the Some I Care About forum, which is a more appropriate place for you to post. I changed the title of your post/new thread from "Life expectancy after AIDS" (the title of the thread in LTS) to one that more clearly reflects the subject matter of your post.

I'm terribly sorry for your loss and it's so sad that your grandchildren have lost their mother. It's awful that she was misdiagnosed, and tragic that she did not take the meds that save so many lives today.

Please stay strong for the children. And please know that you're more than welcome to come here to vent and gain support from others who have a good idea of what you're going through.

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Offline pozniceguy

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Re: Courtney’s Story
« Reply #3 on: February 17, 2009, 12:22:14 pm »
Such a sad  case that could have been detected/prevented by a simple notation on a form at the Dr's office.....I was advised  to have at least one close person as an alternate person to be notified of issues with my treatment / changes in my status...I did that ..haven't had to use it but this sad story certainly highlights the quality of that advice...

I am so sorry for your loss in such a tragic scenario...my heart goes out to you and the children

RIP... Courtney...

remember the good times...honor the past but don't live there
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Offline kellyspoppi

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Re: Courtney’s Story
« Reply #4 on: March 07, 2009, 12:47:51 pm »

i wish to thank you for sharing with us your tragic ordeal. i'm sure this had to have been an extremely difficult task, putting into words your daughters plight.

by doing so you may have saved another person from having to go through such a painful experience.

god bless you for your courage and may the spirit of your daughter, courtney, live on through the love you share with her children.  she knows she has left them in very capable hands.



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Courtney Leigh Hewitt_Woman of Action
« Reply #5 on: September 28, 2010, 10:33:27 pm »
 / FRIENDS / AIDS - H.I.V. / Team Courtney Taking Action! – AIDS WALK, October 2, 2010
Team Courtney Taking Action! – AIDS WALK, October 2, 2010
September 27, 2010 By admin Leave a Comment
Team Courtney is Taking Action!
October 2, 2010

This coming Saturday, October 2, 2010…..there is an,”Aids Walk”, in Washington, D.C. for Aids Awareness and there is a team called,”Team Courtney”, that will be representing not only my daughter Courtney, but countless other women, men and children who are living with or have lost their lives to PML and HIV/AIDS.
The team members will be carrying posters and wearing Tee Shirts with Courtney’s picture on the front and Courtney’s Story on the back.
Thanks again to you and CFNews 13 for your past,
present continued support and prayers for our family!
Courtney’s Story_Woman of Action

A Celebration of Women
Most respectfully yours,
Reginald Todd Hewitt_Author
Courtney’s Story
Chloe’, Kylie, Claudia and Alexander
434 North Normandale Avenue
Orlando, Florida 32835


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A Father's Cry for Awareness
« Reply #6 on: September 28, 2010, 10:36:54 pm »
Central Florida Father and Grandfather
Raising Worldwide Awareness of PML
By corkeesdad
Orlando : FL : USA | Jun 29, 2010
1 0
Views: 1322


Add your media to this report: Images | Videos Cell phones use report code: @6193302


A grieving Central Florida Father and Grandfather of four small children, begins his own personal quest to raise,”WORLDWIDE AWARENESS of PML“, a very rare viral disease that affects different areas of the brain that controls the Nervous System. PML is caused by the JC Virus which lies dormant in 85 to 90% of our World’s population. That’s why it has become so important to raise the awareness necessary that will enable others around the world to recognize and obtain proper treatment before it’s too late. For his daughter Courtney Leigh Hewitt of Orlando, Florida, a single mother of four small children this was not the case!

At first sign of her symptoms, her own Infectious Disease Doctor didn’t know what PML was, nor had he ever heard of it! He actually had to Google it! Sadly, she was told to seek a Neurologist and assured her that her condition was not related to HIV and was merely neurological.

Weeks went by, almost two months without proper treatment until it was too late!

By the time PML was confirmed by another, better qualified,” Infectious Disease Specialist“, to much time had past. The required treatment was delayed and his daughter, Courtney at the age of 31, died of this horrible disease.

Had only the,” INFECTIOUS DISEASE SPECIALIST,” been knowledgeable of PML, the outcome would have been different and perhaps four small children would still have their mother!

If you or someone you know and love has ever had the Chickenpox, has a weakened or compromised Immune System, you will definitely want to read this incredibly compelling true story!

You can follow this story on Facebook and Twitter and visit his daughter Courtney’s web site at:

To read this amazing true story of a young mother’s effortless battle with PML go to http://www.rosedogbooks.com


Orlando, Florida, USA

Reginald Todd Hewitt
Orlando, Florida 32835

Offline jkinatl2

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Re: Courtney’s Story
« Reply #7 on: September 29, 2010, 12:41:20 am »
Having had my own issues with infectious disease doctors misdiagnosing me until things got terrible, and then disbelieving my  actual diagnosis until I submitted the biopsies and reports from the hospital, I can empathize with this story.

It is a true tragedy that often, it appears that the time we must be the MOST knowledgeable and fierce advocate for our health comes when we are LEAST able to fend for, or speak for ourselves.

That is one of the real and absolutely verifiable benefits of a community like this. I wish there were more.

Thank you for sharing your story, and for taking steps towards advocating for others, people who might not be able to speak for themselves. What you are doing is leaving a legacy of hope and life.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline kanika123

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Re: Courtney’s Story
« Reply #8 on: November 24, 2010, 09:48:01 pm »
I am very sorry to hear about your loss,

and i want to thank you now i understand what has happened to kanika.she has the same illness.the doctor here (thailand) told me she had a stroke but now after reading courtneys story i understand what kanika has.
they sent her home from hospital saying 50/50 its 3 weeks now and her sight has gone and she no longer speaks english,stopped eating.
thanks again for helping me understand all this its so difficult to get help and information here in thailand.


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