Kennedy May Willey in the hospital. Source: Pray for Kennedy May Facebook Page

by Health Impact News/ Staff

Kennedy May Willey’s first seizure took place when she was nine months old, on December 26, 2008. It occurred 8 days after receiving her DTaP vaccination. The seizure lasted over 40 minutes and entailed a dramatic helicopter ride to the nearest major hospital in Texas which was over an hour away. Fortunately, little Kennedy rebounded and within a few hours the doctors wanted to send her home, saying that the seizure that had nearly killed her was a “normal febrile seizure.”

Her mother Dawn knew there was nothing “normal” about it and insisted that they keep Kennedy overnight for observation. A nurse told her she was paranoid, but within five minutes she was seizing again.

Dravet Syndrome Diagnosis

Eventually, two pediatricians, one allergist, one cardiologist and no less than six neurologists later, Kennedy was diagnosed with Dravet syndrome. This was not good news. For parent or child, Dravet can be a terrifying diagnosis.

The prognosis is anything but encouraging, the mortality rate is exceptionally high — 15-20% — with most dying suddenly while asleep, and seizures are severe, lifelong, and generally bring a host of developmental, behavioral and medical issues affecting every aspect of the child’s life.

Most children with Dravet are given anti-epileptic medications, even though Dravet does not tend to be responsive to medications. After reading story after story of children for whom medications made little to no difference, Kennedy’s mother, Dawn, felt there had to be a better way.

Through a series of fortunate events (apologies to Lemony Snicket), she was led back to her chiropractor and DAN! (Defeat Autism Now!) doctor who was eager to help, and the two struck up a collaborative relationship. Over time, they came to believe that Kennedy, like so many other medically complex children, had a “compromised gut” and if her gut were healed her health could be greatly improved. They started her on the Specific Carbohydrate Diet (SCD) and eventually transitioned to the Gut and Psychology Syndrome (GAPS) diet.

“Miraculous” Results through Diet

The results of her diet change approached the miraculous. Dawn estimates that Kennedy’s symptoms improved about 98%, with a huge reduction in frequency, duration, and intensity of her seizures. In addition, they no longer occurred randomly throughout the day, but typically occurred only when she was asleep. Children with Dravet’s are expected to regress from age two onwards due to the tremendous stress the seizures put on the developing nervous system.

Kennedy, however, has been beating the odds. She is now seven years old and generally lives a full “normal” life with her family in California. She attends a regular school, took surfing lessons in Costa Rica, plays tennis and the piano, and loves to swim and ride her bike.

Relapse: Seizures Increase

But life is always a little precarious with a severe chronic illness, and recently the Willey family came face to face with their worst nightmare. Last week Kennedy experienced an increase in seizures. The seizures began “clustering” requiring medical attention.

On Thursday, April 21, she was taken to her local hospital, but they decided she needed to transfer to a larger hospital: Children’s Hospital of California (CHOC) – Orange County. Dawn and her husband, Carl, were upset when they heard the news because they had heard numerous horror stories about the head of neurology at CHOC from other parents and doctors.

From minute one, they say their fears were confirmed. Dr. Mary Zupanc reportedly swept into the room announcing that she was the foremost expert on Dravet. She allegedly bad-mouthed the Willey’s Dravet doctors and refused to believe that, until a few days before, seven-year-old Kennedy had been running on the beach, leading a “normal” seven-year-old life. She allegedly told the Willeys that there were no “normal” un-medicated children with Dravet.

Of course, the Willeys have pictures and videos of their daughter to back up their claims, but they say Dr. Zupanc refused to look at them.

Drug Cocktails Begin and Conditions Worsen

Kennedy was already on two anti-epileptic drugs when Dr. Zupanc added Depakote, a drug that they say had been known to increase Kennedy’s seizures previously. She allegedly went into more cluster seizures and her tongue swelled up. The doctor ordered an EEG, which indicated no seizure activity, but her brain waves were slow.

The Willeys insisted that her “out of it” condition was attributable to the unfamiliar medications. Dr. Zupanc, reportedly not believing the parents’ testimony, insisted there must be some huge underlying problem, probably encephalitis. She allegedly pushed a CT scan and a spinal tap. Kennedy had to be put out for the spinal tap, adding more meds to the cocktail.

On Sunday morning, they allegedly administered more Depakote, which touched off more cluster seizures and a swollen tongue. Clearly evident to the parents, Kennedy was allergic to the medication.

The answer from Neurology? Even more Depakote.

Parents Threatened with CPS

That was when Dawn had had enough. She says she ran in and stepped in front of the nurse who was trying to do as the doctor had ordered. The next thing they knew a neurologist came into the room yelling about getting a court order if they continued interfering with Kennedy’s care. At 11 p.m. that night, a representative from Child Protection Services allegedly knocked on their door and interviewed the underslept, overstressed parents about their “medical neglect” until 1 a.m.

All the while, Kennedy allegedly had been given no food of any kind. Dawn had been begging for a feeding tube since the beginning to help Kennedy with metabolizing all the drugs, but Neurology had convinced them she was in danger of aspirating.

Zealous Doctors Want to Expand Treatment Beyond Dravet

Dr. Zupanc, arrived Monday morning accompanied by a large group of doctors and allegedly announced that there was something wrong with Kennedy other than Dravet, and she would be proceeding with in-depth testing, including another spinal tap and a brain MRI with contrast.

Kennedy was reportedly now having subclinical seizures — the second EEG showed eight 10-second seizures – she said, and that gave her grounds to increase the medications.

Parents Hire Attorneys in Attempt to Leave Hospital

After the CPS visit, the Willeys knew they had to get Kennedy away from CHOC and Dr. Zupanc. They formulated a plan to move her to UCSF in San Francisco and hired an independent medical advocate and two attorneys.

They weren’t sure if they were doing the right thing, though, until they met with the metabolic doctor who allegedly told them that Dr. Zupanc was conducting a ridiculous fishing expedition and that Kennedy’s body was too stressed for another spinal tap.

They realized that they were fighting for Kennedy’s life.

Carl asked the PICU pediatrician if he thought Kennedy was stable enough to be airlifted to another hospital and he said yes.

They expected to leave CHOC that afternoon, but at lunch time word came down that Dr. Zupanc had blocked the transfer saying Kennedy was unfit for travel.  Carl met with the pediatrician saying, “I beg you to save my daughter’s life and release her. You have the power to do this because you are in charge on my daughter’s floor.” The doctor’s response: “You have to remember that after you leave tonight, I’m still going to have to work with her and deal with this.”

Transferred to UCSF in San Francisco


Kennedy was transferred to UCSF in San Francisco. Image from Pray for Kennedy May Facebook Page

After hours of battle, the doctor finally agreed to release Kennedy. The transfer would happen the next morning. However, delay after delay kept them at the hospital till mid-afternoon, and before they left, Kennedy was given a final high dose of medications, taking her to toxic levels.

Kennedy finally arrived in San Francisco on Wednesday (April 29th) and has reportedly been receiving excellent care since then. She is eating real food and smiling again.

CPS Threats Followed Them to San Francisco

One might think that this would mean the Willeys could breathe a sigh of relief, with their nightmare finally over.

Unfortunately, that does not seem to be the case. Last night (April 30th) Kennedy’s pediatrician at UCSF came to the Willeys and told them that CHOC had called CPS in San Francisco accusing the Willeys of “severe medical neglect,” saying that among other ridiculous charges they had “denied all meds.”

The representative from CPS in San Francisco interviewed the Willeys and agreed with everyone at UCSF that the Willeys were exceptional parents, CHOC’s complaint was “totally unfounded,” constituting blatant harassment, and the case would be closed.

Willeys Want to Warn Other Parents

The Willeys hope this may finally be the end of their nightmare, but they wonder about the next unsuspecting family?

Dr. Zupanc’s information at CHOC can be found here.

Also, the Willeys report that Dr. Maria E. Minon is the Vice President of Medical Affairs at CHOC, and her information can be found here.

The Willeys just want to have the freedom to choose their own medical care and treatment plan without being threatened by CPS because of over-zealous medical authorities who believe their treatments are the only ones available. They do not believe that doctors should try to coerce parents into accepting their methods and pharmaceutical products when other options are available.

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