Over the last couple of decades we have seen the emergence of a lobby that believes in giving power to “experts” to seek the good of all children. Nevertheless parents continue to defend their right to make the best individualized decisions for their child. We are seeing that tension between parent and professional become more entrenched each year.

This year has seen a rise in the number of appeals in which an earlier guilty verdict from a charge of “shaken baby syndrome” or “medical child abuse” has been thrown out. These appeals are rising as reports and expert witnesses show flaws in the science behind those convictions. Parent and child advocates like Diane Redleaf at the Family Defense Center in Chicago and law professor Maxine Eichner at the University of North Carolina are exposing the legal and ethical issues that arise when doctors act in a forensic role (gathering evidence against parents) rather than in the traditional care-giving role of their field.

Parents and children infected with tick borne illness (TBI’s), understand this all too well.  Due to a schism in the medical community over proper diagnosis and treatment – patients are the ones who suffer.  Parents are often told by the mainstream medical community that they have Munchausen by proxy, a psychological disorder marked by attention-seeking behavior by a caregiver through those who are in their care.  Children having a difficult time in school are told they are “lazy,” or “bored” and they just need to buckle down and work harder.

In other words – parents and children with TBI’s are frequently told they are just making up symptoms to get attention.  

Having lived this nightmare on steroids for over 4 years, I can attest to the mental anguish, out of pocket expense, marital/familial strife, and pain Lyme/MSIDS (multiple systemic infectious disease syndrome – or Lyme with coinfections as many have far more than just borrelia the causative agent of Lyme Disease) causes.  

Solution: The Parental Rights Amendment

A proposed Parental Rights Amendment to the U.S. Constitution (PRA) would provide that “the liberty of parents to direct the upbringing, education, and care of their children is a fundamental right.” By setting a firm constitutional standard to protect these rights, the Amendment would provide clear direction for courts, doctors, child welfare workers, and other government officials. Racial bias would diminish as fewer cases are left to the discretion of a judge or other state agent.

Another provision of the proposed Amendment would protect the rights of persons with disabilities so that mothers like Sara Gordon never lose their children in the first place. The proposal states, “The parental rights guaranteed by this article shall not be denied or abridged on account of disability.”

The attack on parents in America continues. The PRA provides the single greatest means for parents to fight back – and win.

Sadly, medical error is the #3 cause of death in our country according to a 2016 report. And even the best doctors are rarely in a better position than a loving parent to make the difficult decisions for a child.

Most recently is the case of Charlie Gard of the United Kingdom whose parents raised $1.6 million in private funds to transport him to the U.S. for further care but the state hospital has been granted the legal right to pull the plug on the disabled infant at any time.

What happens in Europe has a way of coming here, and way has been paved due to the Supreme Court’s Troxel v. Granville (2000) decision.  Where once parental rights were afforded “strict judicial scrutiny” protection (Troxel, p. 80), now those same rights are granted only “some special weight” (ibid., p. 70)—and what that means varies from judge to judge and case to case.

Right here in the U.S., the family of Justina Pelletier found that out the hard way in 2014 when the state of Massachusetts took Justina from them and placed her in the custody of Boston Children’s Hospital. Doctors there were free to enroll her in clinical trials (without parental consent) for the somatoform disorder diagnosis they had given her, rather than continuing the treatment for Mitochondrial disease that her parents and doctors at Tufts Medical Center had been following. After public outrage following her parents going public, Justina was finally returned to her parents 16 months later, in much worse condition than when she was taken away. Her story reemerged in 2016 as the family filed suit in federal court against the state and the hospital who so severely injured their daughter.
Isaiah Rider of Missouri was also taken by the state over a disagreement regarding his treatment. He was finally released by the state of Illinois who had been granted custody (though he was never a resident of the state until he went into foster care) when Lurie Children’s Hospital (Chicago) doctors decided they knew better than his mom. While in foster care, Rider suffered sexual assault. He was finally returned to the custody of his grandparents in his home state, but wasn’t fully released from Illinois care until June of 2016, months after his 18th birthday!

As sad as it sounds, though, the Riders and the Pelletiers are the lucky ones. A family in New York found themselves facing allegations of child abuse after their infant died at the hands of New York doctors, according to a lawsuit filed last year. The suit alleges that the Long Island infant was pumped full of a “cornucopia of drugs,” including Propofol, “the powerful sedative linked to Michael Jackson’s death” according to a NY Post article. As the baby lay dying, Suffolk County social workers and a “pediatric child abuse specialist” were accusing the parents of shaking her to death, a charge the parents contend was fabricated to cover up the hospital’s own serious errors in the child’s treatment. The couple’s two older children were taken from their care, but returned after two autopsies of the baby showed no signs of criminality. The child protection agency kept its case open for 11 long months, and is now a codefendant in the suit.

Two other cases, one in California and another in Tennessee, also saw the state take children away from loving parents over a disagreement in the child’s diagnosis and treatment.

Yet even as the evidence is showing more and more the fallibility of the medical profession, states are heeding doctors’ and pharmaceutical companies’ urgings to clamp down on parents’ rights in medical decisions. California in 2015 notoriously passed SB 277, a bill to remove from parents the right to make an informed medical decision regarding their child’s vaccinations.   Similar bills were introduced in 19 other states but failed to pass. Proponents of these bills, though, are undeterred, as evidenced by the number of states dealing with similar measures again this legislative session – already as many as 30.

In the medical sub-category of psychotropic drugs, parental rights have seen a slight improvement. Though most psychotropic drugs are not approved by the FDA for use by adolescents, many localities have nevertheless required their prescription to students who misbehave in school. Maryanne Godboldo of Detroit made national headlines 3 years ago when she barricaded herself and her daughter in her apartment and refused to let the city force her 13-year-old to receive Risperdol. The ensuing standoff brought out the SWAT team, a tank, and the national news.  Maryanne’s own case was finally resolved this year when charges – which had been filed or appealed 5 separate times – were finally dropped. Sadly, they were dropped only because Godboldo suffered a massive aneurysm and is not expected to recover from her current comatose state.

But in the state of New Mexico, real progress has been made. That state in 2015 passed a law prohibiting a parent’s choice to withhold psychotropic medications from being used as the sole basis for removal of a child. A New Mexico mother in Godboldo’s situation will no longer have to barricade herself in her home in the first place. If she determines that Risperdol is dangerous, that New Mexico mom can rest easy in the knowledge that no one will be coming for her child.

If you and/or your children have Lyme/MSIDS and you need legal help, contact:  mailto:// and ask for the list of legal organizations who will be able to help you. is a 501(c)4 non-profit political lobbying organization whose goal is to protect children by empowering parents through passage of the Parental Rights Amendment to the U.S. Constitution. They do not provide legal help, nor do they have lawyers on staff.  However, they will help you find help.


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