The Diegel Sisters, Human Guinea Pigs: Medical Kidnapping & Big Pharma Clinical Trials

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By TLB Contributor: Melissa Diegel

The saying “follow the money” could never be more apparent then in the false reporting of the Diegel sisters, ages 11 and 13, both taken directly from their hospital beds in April of 2014. Both children have a suspected condition called Congenital Disorder of Glycosylation, (CDG, a form of mitochondrial disease.) This extremely rare and genetically significant condition is a goldmine to pharmaceutical companies and researchers. The odds of finding two sisters with this same genetic condition is like winning a billion dollars in the lottery, at least for the entities that discovered them. While TGen, the research giant who is connected to NHGRI, and PHOENIX CHILDREN’S HOSPITAL happily hit the jackpot, these two young girls began to suffer the unthinkable at the hands of doctors who had taken an oath to …

“Do No Harm”

NHGRI aka National Human Genome Research Institute, was involved in the $3 billion dollar collaborative “Human Genome Project,” completed in 2003, it was the world’s largest biological project which was funded by the US government, i.e., taxpayers. It provided incredible insight into DNA sequencing, however, because of that drug studies of epic proportions have soared as a result, and unwitting victims across the United States have now become human guinea pigs who are being used in these drug trials. Major pharmaceutical companies such as Shire/ArmaGen have enticed hospitals such as Boston Children’s Hospital with contracts worth as much as $225 million to enroll children who are wards of the state. This is easily being accomplished because children who are wards of the states can be used for research without their parents’ consent (per the Code of Federal Regulation 46.116.) This crude and abusive tactic is the driving force behind falsely accusing parents of medical abuse so that hospitals can have free access to them.

Often times the state goes as far as to permanently terminate the parental rights to achieve their ultimate goal, which by anyone’s standards, should shock the conscience, and yet they inflict this lifelong, devastating, physical, emotional, and financial damage on every child and family they do this to, without conscience, for financial gain and “in the name of science.”

The sisters’ story must be told as it unfolds behind closed doors with an illegal unconstitutional gag order that has threatened and intimidated the Diegel family to stay quiet under the threat of contempt and possible jail time. The mother was forced to take down all pictures, postings, pages and unjoin her prayer groups that she was affiliated with along with being told she could no longer speak her daughters names by Judge Carie Harison. In an attempt to save her daughters lives she eventually spoke out and was held in contempt of court and was fined hundreds of dollars.

The mother, Melissa Diegel has not seen her daughter since August of 2014 and currently has no visitation rights because when she did, she documented that the girls were losing weight at an alarming rate, and that they were covered in bruises. This can be further verified by the CASA, through her affidavit. The CASA was threatened by the assistant attorney general (state lawyer, AAG Kathleen Martoncik) and was forced to destroy evidence of the girls talking about their abuse and experience in the system and was forced to resign.

Kayla 4 months after being taken.

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Since being “Medically Kidnapped” Kayla has lost 14+ pounds and her sister has lost 13+ pounds. Under the care of Dr. Siaw the original fired GI doctor (who was fired just weeks before the girls were taken,) and who now currently, still makes all their medical decisions, the girls lives have been in jeopardy with their extreme weight loss. Kayla’s body fat level neared 0% and she was said to have a vitamin deficiency that was so severe that it allowed such severe bruising as noted on her thighs, arms, legs and feet that they were documented as the size of limes and 6-8 inches long at times. Melissa stated once “it was as if the skin hung over her bones like a drape, there was no fat left and I watched horrifically as they were starving my daughter to death. They wanted me to be quite, but my daughter was going to die so I told her to fight for herself. I have not seen her since. They took away all my visits after that. Can you imagine if you were being starved and they took away your nutrition, the only way you were able to eat and survive…..and then they took away your mother too? This was all under the guise of the state of Arizona, Dr. Siaw and Phoenix Children’s Hospital.”

Complex Medical Issues

Both girls have complex medical issues including gastroparesis that require feeding tubes. The question is why did Dr. Siaw take away their feeding tube nutrition? Especially after he had been treating both girls for several years for their many conditions such as failure to thrive and bowel impactions? Both girls also had positive nuclear scans that showed their stomachs were partially paralyzed, so why would the doctor suddenly stop their treatment?

The Answer Lies in the Billing Codes, Just Follow the Money

In July of 2014 the girls mother learned of a clinical trial her daughters had potentially been entered into. On August 1st 2014 she sent a letter to the hospital and case manager demanding to know if either daughter had been entered into any drug or research trial and she received no response back.

The State Refused to Disclose The Medical Records

The state was doing an excellent job of illegally withholding ALL the medical records even after judge Lisa Flores had ordered for them to be released on July 8th of 2014. But thankfully in April of 2015 Melissa received some good news. She had secretly been writing to her primary insurance company, Cigna, asking for them to release the girls billing records. Finally the mother was able to show through billing codes that Phoenix Children’s Hospital had begun billing Cigna for a rare congenital condition in November of 2013 just 6 months before the girls were “medically kidnapped.” It appeared too, that multiple doctors had conspired to take her two daughters away because the mother was never told about her daughters rare condition.

Hannah and Kayla about 6 weeks BEFORE being “Medically Kidnapped”

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The Clinical Trial

The glycosylation trial whose collaborative agreement is through NHGRI/ TGEN opened up on March 14th, 2014, just 3 weeks before the two Phoenix sisters were medically kidnapped. Ironically this happens to be the same center that saw the girls in December, and then suddenly turned them away. The name of the clinical trial is: “Clinical and Basic investigations into Known and Suspected Disorders of Glycosylation.”

The “Medical Kidnapping” Timeline

In 2013 Hannah starts being billed and treated for Progressive Muscular Dystrophy and….

2013, November 2: Without being told and unbeknownst to mom Kayla The older daughter is diagnosed and the hospital starts billing for Acrocepephalosyndactyly a rare congenital condition where children usually have webbed hands and feet, require a trach and brain surgery. Kayla does not fit into this “category.” The hospital/ doctors knew the Kayla had a rare condition and started to bill for “something.”

2013, December 2: Older daughter’s first time being seen by TGen* who is deeply involved in the Human Genome project based out of Phoenix, Az. (Hometown) Dr. Narayanan prepares for genetic testing (before he later changes the plan as noted below.)

2013, December 6: Younger daughters first time being seen by TGen. Dr. Narayanan mysteriously changes his mind about personally doing any genetic tests on either of the girls. Evidence suggests he had changed his mind after speaking to another doctor, Dr. Siaw, who became the main doctor behind taking the children away from the parents (in April 2014).

2013, December 24: The girls’ family doctor clinic of eight years, Estrella Mountain Medical Group, on Christmas Eve, suddenly sends letter to parents instructing to transfer the girls to the care of Phoenix Children’s Hospital Special Needs Clinic under the care of a Dr. B who had agreed with the clinic to take the girls as patients.

2014, January 10: Both girls attend, as instructed to, Phoenix Children’s Hospital Special Needs Clinic, but the receiving doctor had then been switched to a Dr. Hurliman, who was not previously known to the family. That day he refers the girls to see a new geneticist, Dr. Philip James (who had just transferred from Boston Children’s Hospital.)

2014, January 29: Upon visiting Dr. Siaw (the girls’ Primary GI doctor who oversees the feeding tubes in both girls), a pediatric gastroenterologist who has been treating the digestive disorders in both children for years, mother reviews the medication list. She notices the doctor’s notes that state that “Mother didn’t mention that she saw Dr. Narayanan at TGen’ (the center that turned her away.) The note implied a conversation had taken place between Dr. Siaw and Dr. Narayanan.

2014, February 5: The girls see Dr. Philip James (new geneticist) for the first time who holds off on writing his medical notes, (Mother has first draft).

2014, March 14: After a month of Mother trying to contact Dr. Philip James, she receives a phone call one evening and the doctor states that he is on to something and that “there is only one lab in the entire country that tests for this.” He stated that he attended two conferences and talked to multiple doctors. He was very excited. Despite trying to reach him by phone and letter after that, Mother never hears from him again. He never mentions the condition by name.

2014, March 14: Unbeknownst to the parents of the sisters, a drug trial opens for “Suspected Congenital Disorders of Glycosylation”…. (run by NHGRI, National Human Genome Research Institute)

2014, March 21: Mother asked to replace Dr. Siaw (for both girls) due to his neglect and endangerment of younger daughter i.e., not returning phone calls, ignoring her severe pain and documented bowel impaction being treated from home by registered nurses, under his supervision. Mother is also concerned about the safety of treating with Golytely, (a hospital grade laxative), from home without an IV. See below when daughter ends up being admitted to the hospital for severe bowel impaction. Covering physician had daughter come in for x-ray which confirmed she was still impacted after 4 days of treatment. (4 days Golytely x-ray, 4 days of Golytely then admitted to the hospital). No phone call was ever received from Dr. Siaw or his MA.

2014, March 27: Youngest daughter is admitted to Phoenix Children’s Hospital for a severe bowel impaction: large, small intestine, contents coming out of her stomach the wrong way. Home health nursing notes show in the documents the severity. Mother is told change of shift for new GI is tomorrow. When she asks who it will be, she is told she will have to wait. Medical records show mom fired Siaw, why was he brought in as the new primary Dr. within 24 hours?

2014, March 28: Dr. Siaw, the doctor that the mother had fired and asked to replace on March 21 (see above) comes on shift at the hospital for 7 days.

2014, March 31: Mother files complaint in hospital against Dr. Siaw over concern of care, neglect, nutrition, blood work, and asks for 2nd opinion, round table of doctors and/or Transfer to a different hospital.

2014, April 2: Oldest daughter gets admitted to Phoenix Children’s Hospital for bowel impaction.

2014, April 6: Mother requests the geneticists records again. She notices that the doctor recommends all kinds of testing and suggests the girls have an extremely rare congenital condition called Congenital Disorder of Glycosylation. This exact condition was not ever verbally mentioned to the mother by name, but instead the doctor had implied this great discovery in an odd phone conversation to the Mother in March. Melissa documented it on her Facebook page. This was the very day the drug trial opened, March 14th, 2014.

2014, April 8: Youngest daughter, 10, gets taken by CPS/ DCS.

2014, April 10: Older daughter Kayla, 12, gets taken by CPS/ DCS.

2014, August 1: Mother learns of drug trials and asks Phoenix Children’s Hospital if the girls are participating in these trials. No response is given.

2015, April Mother receives billing codes from the primary insurance company and has documented evidence the hospital has been doing surgeries and procedures on the older daughter and both girls still have serious medical problems.

Glycoproteins and Drug Research

The sisters rare genetic condition, congenial disorders of glycosylation, in particular glycoproteins and the like, are the current stepping stones for the next generation of drug research. Currently there is an on-going clinical study being conducted by NHGRI/ TGEN (Translational Genomics Research) titled: “Clinical and Basic investigations into Known and Suspected Disorders of Glycosylation.” Glycoproteins are found in almost all living organisms that have been studied, and a lack of working P-glycoproteins in the blood leads to highly increased brain penetration (crosses the blood brain barrier easily.) Testing on people, (more easily children), that have this deficiency could lead to the development of drugs that have the potential for excellent brain penetration, specifically on the central nervous system (CNS). This knowledge can be used to create things such as vaccines, in which current government contracts for glycosylation already exist, yet the penetration and effectiveness of the vaccine is in question, so they are still testing and producing as we speak. The Ebola vaccine is one such example. (Interestingly, production of this started in 2012, but is only being produced for 1% of the population.)

Too Many Hands in the Honeypot

Phoenix Children’s Hospital currently has a collaborative agreement with TGen to do testing on patients. Unfortunately under the CFR 46.116 they can even use temporary wards of the state without their parents consent. So while the parents are fighting to gain custody back of their children after being falsely accused like in the Diegel’s case, children such as the Diegel sisters can technically be entered into drug trials legally by the hospitals.

Arizona takes more children than any other state. There are currently 18,265+ children in the system. The previous Governor Jan Brewer and the current Mayor of the city of Phoenix (Greg Stanton) are currently on the board of TGen the genetics company that drug trials on children like Kayla and Hannah!

And when several legislatures went to pass a law for no more drug trialing on children in Arizona it turns out it was knocked down by Rep. John Allen because his son works for Tgen.

When too many hands are greed-ally in the honeypot at the same time and money and scientific discovery is all they care about instead of two beautiful little girls who deserve to be with their loving family and have a bright future, I begin to worry and really wonder what this world is coming to?


It has been 15 months and the parents have just started their trial to prove their innocence. Current Arizona state law states you must have a trial within 90 days. Over 40 motions have been filed on behalf of the Diegel family and 8 judges including judge Hoffman have ignored most of the motions including the Writ of Habeas Corpus.

Melissa has not seen her daughters since August 20th, 2014.

A private severance motion to permanently take away custody of the children was filed by the state. The claim is Medical abuse, but no evidence has been submitted by the state. Incredibly they just recently stated on court record that the girls do not have medical issues. Kayla was put back on her feeding tube after approximately 5 months after nearly dieing and has since gained 10 pounds. Hannah is currently being deprived of nutrition and weighs 13 pounds less than she did with her parents.

The billing records Melissa received form Cigna clearly shows Hannah still suffers from failure to thrive, bowel impactions, incontinence and feeding issues etc.

Kayla currently still suffers from infections, failure to thrive, bowel impactions, incontinence, eating issues and requires her feeding tube.

Melissa’s Psychological exam was normal.

Mother has an affidavit and witnesses showing her daughters are being abused in the states care emotionally, physically and psychologically. The girls have been denied the right to eat appropriately by way of their feeding tubes by the very same Dr. and Hospital that diagnosed these girls to have partially paralyzed stomachs by way of nuclear scan!

The parents still do not have custody.

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G-tube surgery ordered by Dr. Siaw 2 years prior to being taken into state custody. Suddenly one day the same doctor ordered to stop all their liquid nutritional feeds these children who have severely paralyzed stomachs! Kayla lost 14 pounds and almost died!

Kayla had a g-tube style feeding tube for one year but because her stomach declined the doctors decided to switch to a g-j. A g-j as shown above bypasses the stomach completely because the stomach works so poorly. It sent the liquid food to the small intestine instead. For Dr. Siaw to stop allowing Kayla to suddenly eat this way after she had been bypassing her stomach is cruel and abusive. She developed malnutrition and a vitamin deficiency and would go 3 days at a time without eating while in the states care. Notice the bruises in the above picture which show the severity. She lost 25% of her body weight and neared 0% body fat. Her sister then began to loose weight and her body fat after her feeding tube nutrition was stopped as well. Total between the two of them they lost 27 pounds. No child should ever have to suffer this way.

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Kayla age 10 before right before her feeding tube. Kayla day of surgery.

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Kayla 2 years later on her feeding tube, growing and thriving.

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Kayla in the state of Arizona’s care, after she was taken by Phoenix Children’s Hospital, and Dr. Siaw started to experiment on her by withholding her feeding tube nutrition.

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Art work from the Diegel sisters before being “Medically Kidnapped.”

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Find out much more here:

A Miracle For Two Sisters (FaceBook Page)




Some info obtained from:

Health Impact News and Medical Kidnap

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