The saying “follow the money” could never be more apparent than in the kidnapping of the Diegel sisters, ages 10 and 12, both kidnapped in April of 2014. Both children have a suspected congenital disorder of glycosylation, (CDG, a form of mitochondrial disease.) This rare and genetically significant condition is a potential goldmine to pharmaceutical companies and researchers. The odds of finding two sisters with THIS same rare genetic condition is like winning a billion dollars in the lottery, at least for the entities that discovered them. While TGen, the research giant also known as NHGRI, and PHOENIX CHILDREN’S HOSPITAL have hit the jackpot, these young girls suffer the unthinkable at the hands of doctors who have taken an oath to “Do No Harm.” Their medical condition at this moment is dire, while there is a hearing today to permanently terminate their mother’s parental rights. No individual or family can fight these multi-billion dollar entities on their own, and yet their children’s lives hang in the balance.
NHGRI aka National Human Genome Research Institute, was involved in the $3 billion dollar collaborative “Human Genome Project”, the world’s largest biological project. Funded by the US government, i.e., taxpayers, that project was completed in 2003. It provided incredible insight into DNA sequencing, however, drug studies of epic proportions soared as a result, and unwitting victims across the United States have been used as human guinea pigs in these drug trials. Major pharmaceutical companies such as Shire/ArmaGen have enticed hospitals such as Boston Children’s Hospital with contracts worth millions to enroll children who are wards of the state, because children who are in state custody can be used for research without their parents’ consent (per CFR 46.116.) This cruel and abusive code/tactic is the driving force to falsely accuse parents of medical abuse so that they lose custody of their child, or in the Diegel’s case, children, so that hospitals have free access to them. They even go so far as to attempt to permanently terminate parents’ rights to achieve their goals/trials, 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.
Boston Children’s Hospital received $225 million just 4 months before Justina Pelletier was taken, and $15 million of that was given in cash per their “collaborative agreement”. The Diegel sisters are but two of the latest victims of this research related kidnappings that in recent months can be tied to at least 3 families, but it is suspected it is happening to very many more. While the world knows about Justina, the sisters’ story must be told as it unfolds behind closed doors with the usual unconstitutional gag orders that keep these stories from getting out under the threat of contempt and possible jail. The mother was just forced to take down all pictures, postings, pages and more that she was affiliated with that related to her daughters. She now has no visitation rights because when she did, she could document that the girls were losing weight at an alarming rate, and were covered with bruises. This can be verified by the social worker who has since quit due to her alarm in what she was seeing, and no one listening to her. The children now have no advocate who truly cares for their best interests, and are being starved to death in Foster Care where the caregiver doesn’t want their feeding tube supplies in her house! [MORE on this below the “Details and Timeline of Kidnapping”.
As seen with Justina, only public outrage and outcry facilitated her release, and will stop these atrocities from continuing, and we ask that people support the new page we are putting up today called, A Miracle for Two Sisters. The survival of these young girls is directly dependent on rallying widespread, if not international support, and it cannot come soon enough. Please do anything and everything you can to save these girls!
DETAILS: 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.)
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, without any explanation. Another ongoing case is at Lurie Children’s Hospital where a 16 year-old boy was taken. That mother was also accused of medical abuse, but due to public outcry, he has recently been released to a relative, while the fight for the mother to get him home rages on. This boy also suffers from a genetic condition, which causes abnormal, painful tumor growth. He was also taken in April 2014, around the same time as the sisters, and there was a different drug trial study that opened March 14, 2014, (the exact same day the sisters’ study opened) in his area. This study was titled “Phase 2 Study of Cabozantinib XL 184 for Plexiform Neurofibromatosis in subjects with neuro type 1 16 or greater”. Lurie’s collaborative agreement is through Stanley Manne Research Center Institute.
Timeline the kidnapping (Lurie’s and Phoenix Children’s Hospital)
2013, December 2: Older daughter 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 daughter first time being seen by TGen. Dr. Narayanan suddenly and 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 been switched to a Dr. Hurliman, who was not previously known to the family. That unexpected doctor that day 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 (their Primary GI doctor who oversees the feeding tubes in both girls) Mother reviews the medication list, and notices doctors notes underneath that state that Mother didn’t mention she saw Dr. Narayanan at TGen (the center that turned her away.) The notes implied an odd conversation 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). Later Mother requested the medical records again, (2 days before the girls were taken). In it states the girls might have a Congenital Disorder of Glycosylation (not ever verbally mentioned by name, but instead in an odd phone call to Mother in March.)
2014, March – 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 people. He was very excited. Despite trying to reach him by phone and letter, Mother never hears from him again.
2014, March 14: Unbeknownst to the parents of the 17 year old boy, a drug trial opens for “Phase 2 Study of Cabozantinib XL 184 for Plexiform Neurofibromas in subjects w/ Neuro 16 or greater done at Luries Children’s Hospital but funded and overseen by Stanley Manne Children’s Research Institute.
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 and 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.
2014, March 28: Dr. Siaw, the doctor that the mother had asked to be replaced 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 – Sixteen year-old boy is taken by Lurie’s Children’s Hospital
2014, April 6: Mother requests Geneticists Records. She notices that the doctor recommends all kinds of testing and suggests the girls have a Congenital Disorder of Glycosylation
2014, April 8: Youngest daughter gets taken by CPS/ DCSFS.
2014, April 10: K gets taken by CPS/ DCSFS.
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.
Since being in the states care, the older daughter, who is feeding tube dependent, has by order of original fired GI doctor (who now makes all their medical decisions) been removed from her feeding tube. She has proceeded to lose 25% of her body weight and her sister has lost 17% since being in the states care. In fact the older child’s body fat level has neared 0% and she is said to have a vitamin deficiency that is so severe that it allows easy severe bruising as noted on her thighs, arms, legs and possible chest area. This is all under the supervision of the state and Phoenix Children’s Hospital.
A court appointed CASA worker who had been working with the girls’ for the first 5 months of their abduction, was very much concerned with their health. She recently quit because she was threatened by DCS after she spoke up about her concerns for these poor children’s mistreatment in state custody. When the parents spoke out in fear of their children’s lives, they were threatened on multiple occasions as well, visitation taken away, and now efforts to terminate parental rights.
-visitation of their daughters has been taken away altogether
-a motion to permanently take away custody of the children was filled by the state against the Mother – Contempt of court, with the threat of going to jail was threatened/started under the unconstitutional threat that the Mother must remove all current pictures, names of the children, and the Facebook page with 3060 “likes” was told it must be shut down immediately.
Mother has an affidavit and witnesses showing her daughters are being abused in the states care emotionally, physically and psychologically. They are also are being denied the very right to eat appropriately by way of their feeding tubes that the same hospital, Phoenix Children’s Hospital, diagnosed these girls to have partially paralyzed stomachs by way of nuclear scan!