My story is as follows:  I have an adult daughter with special needs – her name is Jillian Friedman.  Jillian was born with multiple disabilities in 1991, and it took years of heartache and great trial to figure all of them out.  Most of her disabilities are genetic, as my husband and I were carriers and gave her the diseases she was born with.

Jillian is diagnosed with Joubert syndrome, nephronophthisis and autism. The symptoms that go with each of these disorders is horrid and daunting to deal with and unfortunately many of them have overlapping symptoms which makes all the more challenging and difficult to isolate each of them for a proper diagnoses and treatment.  Ultimately, Jillian needed a kidney transplant in 2008 due to her Joubert syndrome – she was in the last stages of her life at the time and needed emergency surgery.  We were living in Cape Coral, Florida, at the time she was initially diagnosed with kidney failure, and no physicians would help us or consider a life-saving kidney transplant (that was between the summer of 2007 and the fall of 2008).  Instead, we were told to just let her die, as we would be “doing her and ourselves a favor.”

It was shocking how well-known physicians at large hospitals in the State of Florida could speak to a parent that way.  Anyhow, somehow Mom was able to find a hospital and physician’s who did not mind that Jillian had disabilities and decided (based on blood work and other test findings) to have Jillian come to their hospital for diagnosis and treatment. The same day Mom was able to call the hospital (Jackson Memorial/University of Miami) is the same day the entire family (Mom, Dad and Jillian) left for Miami and Jackson Memorial for help.

Jillian and Mom ended up staying at the hospital for about a week. (Mom slept on a cot next to Jillian’s bed.) Finally after one week and 45 people on Jillian’s medical team, she was diagnosed with Joubert syndrome and told she needed an immediate kidney transplant as her left kidney was gone and the right kidney was only functioning at 10%.

There was no one to give Jillian a kidney and no time was left so, Dad stepped up to the plate and donated his kidney.  We still had to wait for the transplant surgery two full months, and finally on January 24th 2009, Jillian got her life saving kidney transplant.  It turned out that her Dad is Mom’s cousin (due to Genetic testing) and Jillian received the perfect transplant – she will NEVER need another kidney again as long as this one is protected and Jillian does what she is supposed to each day (Mom makes sure of that).

So, needless to say – her parents do protect her health very closely.  Zip forward to 2021….Jillian’s parents had relocated back to the Cleveland, Ohio, area in May of 2020, for better medical care and to be close to family.  The move was done during the beginning of COVID-19.  Mom and Dad took steps to try and ensure Jillian was safe and protected since she is immunosuppressed due to her kidney transplant.

Then around the Summer of 2021 (early August), Jillian was not feeling very well.  She was having some flu/cold type symptoms and Mom took her to the ER for treatment.  She had a fever, cough and all of the usual flu/cold type symptoms.  People who are immunosuppressed have a difficult time getting over illness and so, it can get worse as time goes by.  That is exactly what happened to Jillian.  Just a few weeks later (at the end of August), Jillian ended up in the ER again and this time, the nurses at the ER stuck a swab for COVID-19 up her nose (and Mom too).  Both of us were announced to be positive for COVID-19.  Mom was sent home (not sure why as she was extremely ill), and Jillian was taken to the main campus of the Cleveland Clinic by ambulance because of her supposed pneumonia. She had been tested a few weeks earlier for pneumonia and was found NOT to have it.

No one was allowed to go to the hospital with Jillian in the ambulance or after she got to the hospital and this was a total disaster, since Jillian is NOT capable of advocating for herself.   Mom or Dad ALWAYS go to the hospital with Jillian and remain at her side during the hospital stay simply because Jillian CANNOT ADVOCATE for herself due to all of her disabilities – especially her Autism.

As you know, when you get taken to a hospital there are many, many questions that are asked. There are NO PROTOCOLS at any hospitals (as far as we know) for patients with autism much less her Joubert syndrome (which is a very rare disorder and most physician do NOT know what to do).  This makes their hospital stays more challenging not only to them but also their caregivers. I use the word “caregiver” very loosely here as NO CARE that was even FAIR OR APPROPRIATE was given to Jillian during her hospital stay – if anything SHE WAS MISTREATED AND TORTURED.

By the time she got to the hospital (and because Mom and Dad were not there), she did not receive the attention she needed for her pneumonia or whatever it was she had (no medication or protocol for that was ever given to her).  Also, due to her kidney transplant, Jillian MUST TAKE EVERY DAY her anti-rejection medications – there are two of them, Prograf and Cellcept; without these she WILL DIE.  As far as we know, these too were NEVER GIVEN TO HER.  As far as I know, she did not get the water she needs to drink each day (it is several liters per day to keep her hydrated), did not get food, and did not get anything else needed to treat her medical conditions or her person.

It took a few days before anyone called us from the hospital to let us know what was happening to Jillian. When that phone call finally came, Mom was on the phone with one of the nurses (no physician ever called Mom or Dad during Jillian’s entire hospital stay, and we thought that was weird).  The nurse would only ask if Jillian had a DNR or any type of End-of-Life Protocol.  Immediately we thought that was strange to ask anyone.  Then the nurse said that they needed permission to give Jillian the COVID-19 PROTOCOL that had been instituted by the Government, and then she went on to tell us what that was – she did say Jillian needed to be given a lot of remdesivir and to be put onto a ventilator or she would expire quickly.   Mom knew about this horrid Government Instituted Protocol (parents are Patriots and very much AWAKE), and said NO immediately.  Then Mom stated to the nurse who was very insistent Jillian get this protocol immediately, that if Jillian is given this or any medication to END HER LIFE, there would be consequences for it as it was NOT needed nor was it appropriate. The nurse flatly refused to listen to anything Mom had to say.  The long and the short of this was, Mom had to call the Kidney Transplant Department of the Cleveland Clinic and get Jillian’s physician (Dr. Nurko) involved in her hospital stay.  At NO TIME, did Mom or Dad EVER receive a phone call from Jillian’s PCP nor the physicians assigned to her case at the hospital. We thought that was extemely STRANGE.

All these people wanted to do was KILL Jillian.  We all know now that this was for MONETARY GAIN and nothing more.  These physicians thought money was more important than a person’s life.  There is no information in Jillian’s MyChart file for the Cleveland Clinic regarding her stay there even though we DID TRY to obtain this information. Thought that was strange as well.  So, you cannot see ANYTHING the Cleveland Clinic DID or DID NOT DO for Jillian.  They really did very little.  She was NEVER treated for her supposed pneumonia (only a few weeks before she did NOT have pneumonia but magically had it a few weeks later after her COVID Swab at the ER).

When Jillian was finally released from the hospital about 5-7 days later – sorry we do not have that information, we had to go pick her up outside of the hospital.  There was no paperwork given to us and no follow up by any nurse or physician.  The only follow up being given to us were weekly phone calls from Summit County Ohio about COVID-19 and how they told us to STAY HOME AND QUARANTINE.  All we were given was a script for pills for the pneumonia.   Jillian has NEVER done well on pills for this condition – they simply DO NOT WORK.  And so, nothing happened to get rid of the pneumonia, and she continued to get worse and worse.  Finally, we were able to get the RIGHT treatment (Mom had to make some phone calls and yell at some people before she could get anything), and Jillian slowly recovered.  Mom also finally recovered but unfortunately both Jillian and Mom had nasty COVID-19 symptoms for months afterwards – no sense of taste, smell and tired all of the time.  Both had hair loss, weight loss and depression.  Mom ended up having a nervous breakdown in February of 2022, and was hospitalized at two different Mental Hospitals for a few months, leaving Dad all alone to take of Jillian.  Mom is the main caregiver and that was a disaster.

Jillian had been going to a Day Care for Adults when she got sick in August of 2021.  Most likely what happened was, all if not most of the individuals at her Day Program were jabbed with the COVID-19 vax, but NOT Jillian.  It was most likely spike proteins Jillian acquired and brought home to expose her parents.  Oddly enough, Dad NEVER got COVID-19 – or whatever you want to call it – just Mom.

We are angry and upset that all the Cleveland Clinic wanted to do was the COVID-19 Protocol and kill Jillian. They did NOT realize we knew exactly what they were trying to do.  Without guardian permission, it was ILLEGAL for them to do anything, and this must have frustrated them.  I do understand that they gave many hospitalized patients the JAB along with the COVID-19 Protocols against the patient’s wishes or family member wishes.  Many, like Jillian, were never treated for their “REAL” medical issues and both starved and never give fluids or medications for their ongoing medical issues (whatever those might have been).  To hold back medications and water ESPECIALLY in Jillian’s case was MEDICAL MALPRACTICE at its finest. and something MUST BE DONE.

Also, Removing ALL OF HER MEDICAL INFORMATION DURING HER HOSPITAL STAY from her MyChart is also NOT ALLOWED.  And finally, having NO PHYSICIAN ASSIST JILLIAN while she was hospitalized – KNOWING FULL WELL OF HER DISABILITIES AND MEDICAL CONDITIONS was absolutely MEDICAL NEGLECT is despicable and disgusting – especially after everything we went through in Jillian’s short life to try and save it and give her a better quality if life.

Mom did call a few lawyers in the past 2 years but was told (not in a nice manner) that no one would take our case because Jillian was NOT DEAD and was NOT INJURED.  They said ABUSE and REFUSAL to give life saving meds was NOT a reason to go to court and they told me basically to buzz off.

To this very day, the Cleveland Clinic has systematically refused or made up stories to NOT help Jillian with her long list of Medical Issues.  This is and has been terrible for our family to have to deal with on a daily basis.  We are continually hounded by the Cleveland Clinic to get jabs and other horrid vaxxes for various maladies.  If you do not listen to them, they ignore you and do NOT treat you at all.  This, too, is totally despicable.

Hope more people come forward with their stories whatever the outcome was.  We have lost a good friend due to the COVID-19 Protocol at the Cleveland Clinic.  Unfortunately, our friend’s wife refuses to call anyone and talk about it.  This has happened to so many families who cannot afford legal assistance and as you know, are struggling everyday to just to make ends meet (like our family) as we are all on only Social Security and retired.  Thank you for the opportunity to tell our story about Jillian. She deserves only the BEST that life can offer regardless of whether or nor not she has a disability.  Susan Friedman