Before Lucas Cote had ever had a full neurological exam, his mother sensed something was wrong—despite a pediatrician who dismissed concerns.
For Dr. Jenni Bush, a quick prognosis was a necessity to fast-track her son’s recovery from whatever was at the root of his involuntary movements, inability to breastfeed, head lag, and lack of eye movement. A doctor of chiropractic medicine, Bush located a colleague in Boston who specializes in complex cases. But on the hot Arizona day of their flight, Lucas began having seizures, and their journey detoured to the local emergency department.
“Three days later our world was turned upside down,” Bush recalled about the day of her son’s diagnosis. “I don’t think the hospital’s ever seen (anything like) it. We did a CT scan and the neurologist came in and said bluntly, ‘We think a part of his brain is missing.’”
There was a possibility that Lucas had moved during the scan, so they were admitted to the hospital for more tests. The next day, the buzz of a potential new or rare disease attracted 20 doctors to his case.
Within 24 hours, Lucas was diagnosed with pontocerebellar hypoplasia (PCH), a rare genetic disorder that affects brain development. There are less than 1,000 cases in the United States. Doctors put his life expectancy at age 10 with no intellectual development beyond age 2. The family was told he would likely die in childhood from kidney failure, due to medications, or pneumonia. Meanwhile, his brain would simply degenerate over time. He would never talk, roll, sit, crawl, or eat on his own.
What happened next was not unlike what happens in any rare disease diagnosis: shock, grief, guilt, determination—and then an action plan.
The news of Lucas’s prognosis was dismal enough for Bush and her husband, Tim Cote, to have only the briefest of pity parties. Along with their two daughters, Olivia and Lily, the family’s faith that God would intervene propelled them forward to search the world over for treatments that would allow Lucas to develop into his fullest potential.
“It’s weird to say but Lucas’s diagnosis is probably the best thing that’s happened to our family,” Bush said. “It’s been the hardest thing we’ve ever faced, but hard times usually bring the best things.”
Just after returning home from India, where Lucas underwent two types of treatments not available in the United States, Bush shared with The Epoch Times the miracles they’ve already witnessed through their 2-year-old. Their incredible story offers hope not only to the 30 million Americans who suffer from rare diseases—about half are children diagnosed with genetic disorders—but also to anyone who is sincere about overcoming their own poor health.
In sum, rare diseases affect 30 million Americans—a not-so-rare conglomerate of some of the most active patients navigating the health care system. A disease is considered rare if there are fewer than 200,000 diagnoses. There are about 7,000 different rare diseases.
The least likely to experience a good outcome, rare disease families fight harder than people who are diagnosed with more ordinary preventable diseases. They tend to research more, understand complex medical terminology and mechanisms, and seek companionship with doctors taking care of their children—though an article in the Orphanet Journal of Rare Diseases pointed out they don’t always find it.
Parents of children with rare diseases had the opportunity to share their stories for the article. The aim of publishing the interviews is to help physicians build trust with this unique group of patients and improve bedside manner.
The article noted one parent’s perspective:
“If the doctor says, ‘There are clinical trials. There’s a chance …’ then he’s your best friend. But if he says, ‘There’s nothing; we can’t do anything. There’s absolutely no way forward. Research is progressing very slowly …’ that your child has little life expectancy. Like, how do you get that into your head and take it on board? So that kind of doctor’s not a good friend.”
This unique subgroup of patients has parents who grow their knowledge of medicine in unimaginable ways, bond with like-minded families, and work fiercely with doctors and other specialists to pinpoint a cure. The article aptly describes the relationship between parents and doctors as one built on trust, ethical values, transparency, empathy, and respect.
Parents describe their experiences as “feeling like you’re in no man’s land,” like they’ve been abandoned to their fate. Gaining a sense of control may be one reason they get so involved with care. Another explanation is that parents aren’t certain physicians understand their child’s disease and will advocate for the best care—something the article notes is a theme in several medical papers. This leads parents to become experts in their own child’s health.
“These parents want to feel they are members of the team overseeing their children’s medical care and that their needs are being met at all times,” the article said.
Lastly, the article pointed out parents may harbor guilt for their child’s disease, realizing that most are due to genetic factors. It can lead to parents putting their own needs secondary. These feelings are vital for physicians to consider if they want to be more emphatic.
Bush said guilt was definitely an emotion that motivated her. Raised on a farm, she knew that exposure to pesticides and chemicals gave her more toxin exposure than the average person. Even though Lucas’s disease is genetic, this concerned her.
But every negative feeling has been met with resolve, including launching the Flower Child Method—a protocol of detoxification, nutrition, and brain stimulation based on a combination of her knowledge as a chiropractor and new tools she has learned since having Lucas. The program helps pay for Lucas’s extensive care, which she said takes time, grit, tears, money, and unfortunately, lots of travel.
They have taken him on more than 30 roundtrip flights—most within the United States but the most recent one was to India for 28 straight days of Cytotron® treatments. It’s offered the most hope so far for him to maximize the brain he has, with two more trips planned to complete treatment this year, buoyed by the countless hours of therapy and at-home exercises that laid a foundation for a brain ready to heal.
The Cytotron® device—hailed as a miracle by rare disease families, but only available in the United States for specific cancer treatments to improve palliative care—gives quantum magnetic resonance therapy for many diagnoses in India, from joint pain to any disease where quality and dignity of life could be improved.
Invented by Dr. Rajah Vijay Kumar, the Cytotron®machine has 88 “guns” that shoot computer-programmed beams based on age, size, gender, and disease over a targeted area. The radio frequency beams alter cell membranes in such a way that cell division is impacted—either halting it or starting it, depending on the desired outcome. In cases of cancer, it arrests tumor growth.
Bush first heard about it from other parents with brain-injured children and reached out to Kumar directly through social media. Lucas was approved because they believe it can create neural pathways in the brains of those with cerebral palsy, which is a sister diagnosis of PCH.
Some cases of PCH are initially mistaken as cerebral palsy, as both affect a person’s balance and ability to move. PCH 2, the type Lucas has, usually shows up soon after birth with feeding difficulties due to swallowing incoordination, regurgitations, vomiting, failure to thrive, respiratory difficulties or apneas, and sleep disorders.
Neurodevelopment is severely affected. Microcephaly, which is caused by underlying cerebellar hypoplasia and a small pons (the part of the brainstem that links the medulla oblongata and the thalamus), typically stalls development at 2 months or leads to regression later.
“We won’t accept that,” Bush said. “We don’t keep him in a chair. We don’t treat him like he’s fragile. It takes the whole family. We’re all on board.”
Bush and Cote each took a stay with Lucas during 28 days of treatment in India, recording telling videos of miracle milestones along the way. The most noticeable changes were cognitive developments that accelerated his age by months, improved eye movement and new facial expressions with emotions, and also less head lag and muscle spasticity. He can sit up, unsupported, for much longer.
The Cytotron’s® sci-fi form is validated by its rapid, painless, side-effect-free sessions that take seconds to minutes. It received the U.S. Food and Drug Administration’s (FDA) approval through its breakthrough device program in 2019 for three types of cancer. The program speeds up the regular approval process for devices without compromising the process by allowing them to move to the front of the line, according to the FDA.
By the time Lucas returned to the United States, his face registered excitement when his sisters greeted him at the airport—a treasured moment for the whole family. His sister, Lily, who loves to hold Lucas is now finally able to keep him on her lap until he falls asleep since he’s not as spastic.
“He’s like a baby now, not a 2-month-old infant locked in a toddler’s body,” Bush said. “He never cried before. He’s never made an emotional expression before. It was a very weird emotion to see him cry. I wanted to make him sad again just so I could see his pouty face.”
Bush believes the Cytotron® treatment was so effective because of all the underlying therapy and other non-traditional treatments they’ve invested in since Lucas’s diagnosis.
Getting Lucas off his seizure medication was an early and relatively easily achieved goal. Bush wasn’t interested in watching the side effects kill her son. She has updated his timeline with instrumental treatments and health care providers on her blog.
“We fired a lot of people who told us there’s no hope. Every doctor … I asked, ‘If this was your child, who would you see?’’’ Bush said. “We fill our brains with positive things and hope. People want to help. You just have to find them. You also have to find the right thing.”
It started with an online course on how to help your brain-injured child that began their journey in earnest and they learned to look at Lucas’s disease as simply a brain injury without any parameters or expectations.
“They didn’t say what change could be made but they showed us videos of really, really brain-injured children getting better,” Bush said. “I said, ‘That’s going to be Lucas. God is good. We’re going to figure this out.’ You can either wallow in your self-pity or you can make a change.”
Doors began to open as connections were made with other families and various brain healing experts. Some pivotal treatments were:
In addition to the above treatments, Lucas has also experienced hyperbaric oxygen chamber treatment, stem cell therapy, eye patching, craniosacral chiropractic care, and feeding therapy.
Bush said she’s been assured that Lucas will one day attend school, walk and talk to the full capacity of his brain, and though it’s undersized, his brain is still capable of more healing—the possibility is not just a hope for Bush, she believes it will be.
“I know he’s healed. I’m very content in that,” she said. “I don’t feel there’s a stone unturned. We aren’t searching anymore. We spent our life savings last year. God has provided everything when we need it. What else are you going to spend your money on? My faith is strong, and it’s become even more strong.”
Besides keeping with continued treatments and therapy for Lucas, she has her sights set on reaching more children like him. As soon as the FDA gives full authorization to the Cytotron® for the United States, Lucas’s family plans to purchase one that can be used for other people with rare diseases.
“We’re going to purchase one for families here. That’s in the future,” she said. “Other kids deserve this.”