Medical Kidnapping

Medical kidnapping is defined as the state taking away children from their parents and putting them into state custody and the foster care system, simply because the parents did not agree with a doctor regarding their prescribed medical treatment for the family.”  You can view the source of this definition here.

This narrow assessment doesn’t include, but should, any time that a medical professional takes a family member or individual from the least restrictive environment to a restrictive environment and decides to change treatment.

We decided to link this story in the hopes of broadening awareness.  We want to be very careful to not paint a broad brush across the entire healthcare industry.  There are very many good and honest medical professionals working tirelessly to help their patients.

Here’s the link HERE  of the story as compiled by Michelle Malkin from CRTV.  Check out the story if you haven’t already.

In many ways this is what happened to Derya and is happening across our country.  It is something we all need to be aware of so that we can protect our loved ones.

 

FREEDOM DAY 2018

As many of you might realize, today is the day two years ago that Derya was released from that place we shall not mention.  It kicked a memory of something that happened not too long ago. I was watching Gilmore Girls the other day with Derya. I know, it’s not something you might expect a dad to be doing on the average weekday. There’s a particular episode where the grandfather, Edward Herrmann (One of my super favorites in the show besides all the documentaries he narrated) ends up in the hospital because he had an “episode” and collapsed.  Lorelai, in typical Lorelai fashion, handles the stress in a frantic way with her wit and witticisms, quipping left and right about Luke’s driving ability – all in her way of dealing with stress. As Derya once said, you can explain a lot about life through Gilmore Girls.

At the time of this episode, Derya was curled up in her blanket her attention on the screen as we watched.  She had just had her lunch and was just in chill mode. As I was saying, Lorelai comes into the Hospital with Luke (who is my personal favorite) as she is clearly worried about her father.  Luke is, as usual, acting as the stabilizer to Lorelai’s “seeking the truth” single mom.

It was then that we find Emily, Edward Herrmann’s wife, Lorelai’s mother, actress Kelly Bishop, as she is arguing with a nurse over forms that needed to be filled out. and I hear one of the best two words to describe someone, “paper peddler” uttered by Emily. What ensued is a series of scenes in which the Hospital nurse needed Emily to fill out paperwork for her Husband’s admission and Emily along now with Lorelai and Rory desperately wanting to find out the condition of her husband, father, grandpa, Edward Herrmann, Mr. Richard Gilmore the Patriarch of the family.

The show goes onto a great episode ending where everyone deals with their fear of losing Edward Herrmann, A.K.A. Husband, Dad, Grandpa, Richard Gilmore.  Edward Herrmann is going to be alright with some medicine and a diet adjustment. Rory who now has a greater appreciation of finances and her family, Lorelai’s penchant to witticisms is back on target after a slight muting at seeing her father in the hospital bed and Emily, her emotional moment passed is back to being the matriarch that we all know has that indomitable spirit and both sets of mother/daughter have made peace after a couple issue arc of having a small feud.  

I mention this because as I was sitting there watching this episode with Derya it occurred to me that wouldn’t it be nice for everyone to not have to worry about going to a hospital.  Samime mentioned to me recently an article in the Washington Post that cited medical errors as the third largest killer in America today – only beat out by Heart Disease and Cancer. You can see the article here for more information.  I mention this because today, the place that will not be named – a hospital in New York City released Derya today two years ago – after holding her for 75 days against her will and having changed her diagnosis from Autoimmune Encephalitis to one of psychiatric.  

As I watched I realized that Richard Gilmore’s doctor was a friend of the family, no threat there.  And yes, it is a television show, therefore the plot is planned out. But I wondered, what if Richard Gilmore had the misfortune of going to this place which shall not be named.  Sure, he didn’t have an established diagnosis of 18 months. Yep, he was given a battery of tests from the “big testing room” as Lorelai called it. In this place that kept Derya, they don’t have the need to give a battery of tests, they might have just decided that he was psychiatric, after all, was he really feeling uncomfortable or was he faking the fall to the floor (it wasn’t seen on the screen, it was only inferred).  Perhaps Emily and Rory only wanted that to be what they saw, that he was having trouble with breathing. After all, we did hear Emily tell Luke that Richard had complained about his tie and that Emily had told him he needed to leave it on and not loosen it “to look good” and this whole thing was a passive-aggressive attempt of Richard’s to avoid the party and the haranguing of Emily. Or perhaps Emily is really the one who has psychiatric issues.  The way she was talking to the nurse might be construed as someone who needed a restraint. She was certainly acting aggressively.

Okay, I know I’m over contextualizing this whole episode.  No hospital would ignore the established diagnosis. Why, would a hospital NOT see a clear medical history from licensed medical professionals as valid? Why would a hospital draw a completely different set of conclusions after a few minutes with a patient when all the other doctors in the patient’s life had over a year and a half of data?   Why would they doubt it and change it to something completely different without even bothering to test it? Or for that matter, why would they willingly give medicines to a patient knowing there was a history of adverse reactions?

Perhaps, if Emily had filled out the insurance papers on time as the paper peddler wanted they might have noticed the great medical plan Richard had and decided they needed to ensure keeping him for weeks and months on end to run up the bill with the insurance company.  “Hey, he’s acting a little weird. Don’t you think?” I can just imagine it. “Maybe we should get a psych consult on him.” I’m thinking he didn’t have great insurance – probably a Cobra plan, that wouldn’t last that long. “Nah, he’s not going to psych, he really just has Angina, we’ll only get a couple of days out of him – I mean we’re only going to keep him for a few days- for observation.”       

The whole second half of this episode brought me back to that moment in the hospital when the doctor told me that Derya was going to be transferred to psych.  We asked them not to. They ignored us. They wouldn’t listen to us, they wouldn’t test her and they didn’t care about the history of recovery, her diagnosis or how much they were hurting her with the medicine they were pumping her with.  They kept on pushing and pushing their diagnosis despite the evidence we laid out in front of them. It would be several court dates, calls from Derya’s doctors, hiring a lawyer, and daily begging them to release our daughter. We reached out to local and state officials, politicians and the public.   And in the end, it was a phone call from Samime to the insurance company telling the insurance company what the hospital was doing. Within three days of receiving the insurance company’s letter, Derya was released from the hospital that will not be named here. Not because she was cured, but because the insurance company told them they would no longer pay.  

Which brings me back to Gilmore Girls and the Washington Post article.  Yes, it’s not surprising the damage that can be caused by medical institutions.  And while Gilmore Girls is fiction, the doctors and nurses made up, it should be noted that there are great medical personnel out there fighting the good fight for everyone.  There are families who need help and get it – even myself. I’ve had several procedures over the years and survived. As in any profession, there are the Hero’s and the Zero’s the Captain America and the Thanos, the Great and the Knucklehead.  Often times they’re on the same floor working with the same people. May God watch out for you, May you have the blessings of your Almighty. And today, what we have called FREEDOM DAY please think of our daughter Derya as today, two years ago she was freed from the clutches of – well.  You know who I’m talking about

 

Much Love,
#FreeDerya

Everyday A Blessing!

It was today, two years ago, that we were told by the administration of the Hospital that Derya would be confined at their hospital for another six months.  It was today, in a meeting with several doctors and social workers we had our hearts broken – again by this institution that “shall do no harm”.  Yet they did.

This picture is meant to identify just how important our Derya is to us.  This picture is Derya resting comfortably at home, after having a nice meal watching some television with her dad.  We took this picture just a few days ago, her vibrant beauty and smile shine through.

As you already know, it was five days after our meeting that the hospital released Derya to our custody.  Amazingly, it was only three days after this meeting that the hospital contacted us to arrange her pick up.   It’s hard to believe in our modern day that Robert Burn’s words, “Man’s inhumanity to man, makes countless thousands mourn.” isn’t just something from history, but active today.  Worse yet, it’s in the hearts of those we were supposed to be able to trust. As some Hippocratic professionals cause more harm and suffering while still, other doctors share in our suffering as their hands are tied as well, unable to change the outcome.

How can we make a difference?  Especially when we have no power. Certainly, we have those who have spoken up about this destructive disease.  And awareness is on the rise.  Yet, in the meantime, families suffer through caring for their sick child and we observe from afar, reliving our own nightmare as we still live within our own suffering. No pain is so great, nor suffering so much as to watch your child in pain and know that there is nothing you can do to take the pain away.  Despite our offers to God to replace us with our child, our pleas of mercy and hope for a brighter tomorrow.

And still, I hear my mother’s voice reading to me Robert Burns poem.

#Dazzle4Rare 2018

With 10% of the population living with rare disease and potentially 7,000 rare diseases out there, it’s so hard for all of us to reach the 90% who do not live with a rare disease and especially the condition(s) we have. If we band together and show the world we are here and have a voice while sharing each other’s stories, we have an opportunity to raise a greater awareness. We can band together as a wider, greater community and spread awareness together and for each other. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.

 

Today, we proclaim Independence Day.  Freedom Day!

This morning, Derya leaned over and gave me a kiss on the cheek and as I pulled away she pulled me close and gave me a second kiss and told me.  “Dad, I love you.” As she wrapped her arms around me and smiled at me.

Today marks the 242 years of Freedom for America, 12 years that we’ve been a family – officially -and 1,079 days of FREEDOM for DERYA! This time three years ago a certain place held Derya in captivity. They were treating her with the wrong medications and were not willing to alter their opinion, their diagnosis or consider that they were wrong – despite the mountains of evidence proving they were.

Today has always been a special day for me as someone whose steeped in history as much as I have been.  Who has come to understand the nuances and the patchwork of history; I have drawn conclusions and then reworked those conclusions and revisited them again.  We don’t have to re-interpret history to understand the importance of the Declaration of Independence and Freedom that was done on this date 242.  However, we do have to recognize how easy it has become to lose that freedom.  Please don’t think that this is a political statement directed at politics; there’s no meant condemnation towards modern politics.

Ben Franklin said it best:  “It’s a Republic if you can keep it.” – Let me paraphrase then – It’s FREEDOM!  If you can keep it!   Hold onto your loved ones.  TO quote Ronald Reagan – “FREEDOM IS A FRAGILE THING AND NEVER MORE THAN ONE GENERATION AWAY FROM EXTINCTION!

Let me amend that quote.  Freedom is no more than a wrong decision away from being lost.  A court, a doctor or other.  Freedom isn’t FREE!
And yet, through the firm reliance on the protection of Divine Providence, we (Samime, Derya, Deniz and myself) pledge to each other our lives, our fortunes and our Sacred Honor.

RELAUNCH!

We’ve taken this opportunity to re-launch FREEDERYA!  Over the coming months, we will be posting updates.  Please feel free to reach out to us.  We hope that you and yours are doing well.

As you might have seen on Facebook, Derya is doing well.  Her picture is in front of our house, eating ice cream and enjoying the flowers.

Thank all of you for your support.