The Experience Miracles Podcast

Advocating for your Child: There is HOPE Beyond a Rare Disease Diagnosis w/ Crystal Villalobos

Feb 27, 2024

Sandhoff Disease, Seizures, and Hope

Episode 9 — Experience Miracles Podcast | Host: Dr. Tony Ebel, DC, CACCP — Pediatric Chiropractor & Founder of PX Docs | Guest: Crystal Villalobos — Parent Advocate & Scan Technician, PWC Chiropractic | Published: February 27, 2024 | Duration: ~60 min

Key Takeaways

  • According to the National Institutes of Health, approximately 7,000 rare diseases affect between 25 to 30 million Americans — yet most families receive little hope or forward-looking care from conventional medicine after a genetic diagnosis.
  • Caden Villalobos was born via Pitocin-induced labor with a cord-wrapped, 22-minute delivery, followed by torticollis and plagiocephaly — birth interventions that created neurological stress layered on top of his underlying Sandhoff disease.
  • After Caden’s seizure medications caused him to sleep 18–20 hours a day and prevented him from doing therapies, his mother Crystal advocated for intensive twice-daily chiropractic adjustments — and Caden is now on a below-therapeutic dose of one seizure medication, with seizures that resolve within three seconds.
  • Neurologically-Focused Chiropractic Care supports children with rare and genetic diseases not by curing the condition, but by rebuilding neurological resiliency, reducing seizure burden, and improving quality of life in ways the medical system does not offer.
  • Crystal Villalobos now works at the practice and actively connects Sandhoff disease families and other rare disease communities to chiropractic care — driven by witnessing Caden’s results firsthand.

Can Neurologically-Focused Chiropractic Care Help Children With Rare Genetic Diseases?

Neurologically-Focused Chiropractic Care does not cure rare genetic diseases like Sandhoff disease — but it addresses something the conventional medical system rarely targets: the neurological dysfunction that compounds the genetic condition and limits quality of life. Dr. Tony Ebel’s clinical approach starts from the premise that every child, regardless of diagnosis, carries unrealized neurological potential. The first clinical step is not to manage a prognosis — it’s to identify the biggest possible outcome and build a plan toward it.

For children with rare genetic disorders, the neurological burden is often compounded early. Birth trauma from interventions like Pitocin induction, cord entanglement, and fast deliveries creates dysfunction in the upper cervical spine and brainstem — the same areas that regulate autonomic function, seizure thresholds, gross motor development, and immune response. When that physical trauma goes unaddressed and is layered on top of a genetic condition, the nervous system faces a two-front battle it cannot win without help.

What chiropractic care provides in these cases is neurological restoration and resiliency — reducing the compensatory stress load so the child’s own nervous system can adapt, develop, and function at its highest possible level. For families like Caden’s, that has meant fewer seizures, less medication, and a quality of life that neurologists said was not achievable.

Rare Disease Day and Why This Episode Exists [0:00 – 2:25]

Dr. Tony Ebel: This episode releases in honor of Rare Disease Day on February 29th. It’s designed specifically to empower and support families battling rare diseases of all kinds.

According to the National Institutes of Health, there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans. In our practice, a large percentage of our patients have genetic challenges, rare diseases, and diagnoses that conventional medicine essentially gives up on. We understand why they put these prognoses on kids with genetic chromosomal deletions — but they do not provide much hope at all. They do not push forward much at all. They do not look to optimize things much at all.

What we do is all of that, as much as we possibly can.

The moment we meet a child, regardless of diagnosis, the first thing we do is dream up the biggest potential and possibility we could ever imagine for that child — and then we get to work with the parents to go toward it.

“We dream up the biggest potential and possibility that we could ever think of, and then we get to work with the parents to go towards that.” — Dr. Tony Ebel

That’s what this episode is. Crystal Villalobos — one of the heart and souls of our practice — is going to share her son Caden’s journey through Sandhoff disease, seizures, and the advocacy that changed everything for their family.

Caden’s Birth Story: Induction, Cord Wrap, and Early Warning Signs [2:25 – 11:00]

Crystal: Caden was born in April of 2020 — right at the start of a global pandemic. My pregnancy never ended the way I imagined it would. His first year of life at home was relatively normal. He had some challenges with torticollis and plagiocephaly, which led to some delays in milestones, but I attributed everything back to that.

His was a hospital birth, 40 weeks and two days. At our 40-week visit, my OB was out, and whoever was filling in said, “What do you think about an induction?” My decision to say yes came from fear — surrounding hospitals weren’t even allowing a support person in the room. Caden is my one and only, my first. I couldn’t imagine something going wrong and having no one there to help me make decisions.

So we opted for induction. He was a very fast delivery — 22 minutes and he was out. Cord wrapped, Pitocin. Once he was out, it took him a good minute or two before he started crying.

Dr. Tony Ebel: That first minute or two — with interventions and cord wrapped — is exactly what we hunt down when we’re looking at the causes of torticollis, gross motor challenges, and colicky patterns. In Caden’s case, there were absolutely genetic challenges underlying his difficulties, but there was also a neurological trigger from that birth that, if left unresolved, would have limited his quality of life significantly.

Crystal: Something I learned from Dr. Tony later — within his first month, maybe three or four weeks old, Caden held his head up for almost four minutes. I thought he was just strong. But that’s not always a good sign.

Dr. Tony Ebel: He got there a little too quick. Too much tension. That torticollis and plagiocephaly really stuck through his first year, causing delays in milestones. Even talking about plagiocephaly — conventional pediatricians are not asking questions of parents or looking for clues in the case history. They’re not going to address the cause because it’s not even in their frame of reference.

Four Months of “Wait and See”: The Pediatrician Response [11:00 – 14:00]

Crystal: At his two-month appointment, I was the one who brought up my concern about his head shape. He was favoring and looking to one side. They recommended more tummy time and holding him in a football pose. That was all.

By his four-month appointment, the doctor was still saying more tummy time, wait and see, let’s revisit at six months.

Dr. Tony Ebel: That’s what’s so wild about the pediatrician approach. They’re hoping it doesn’t get worse. They’re still not going and addressing what caused it in the first place. That’s four months of you knowing something is wrong and them doing nothing.

Crystal: Six months rolled around, they finally referred us to physical therapy. But getting into PT was very slow moving. It was eight and a half months before we enrolled. And literally after two sessions, he went from not being able to sit at all to sitting completely on his own. I thought, okay, this is the missing puzzle piece.

Unfortunately, we never got to see Caden walk. We got as far as a four-point position, but we hit a plateau in those therapies right before his first birthday.

Discovering Neurologically-Focused Chiropractic Care [14:00 – 20:00]

Crystal: I had been following like-minded moms on social media during my prep work for motherhood, and one of them took her kids to a neurologically-focused chiropractor. I thought it was interesting, but at the time I didn’t think Caden needed it.

Once we hit that plateau in PT, I started thinking: are we really getting down to the root of what’s going on? I actually found PWC through a Google search — “pediatric chiropractic office near me.” We live about 40 minutes from the office, but PWC was the first to come up, and the fact that they were pediatric-focused was what I was looking for.

My phone call was with Laura, one of the scan technicians. She could hear some commonalities between our story and hers. I was on break at my job, and our appointment was two days later. I was ready to call off work — I would do whatever it took.

I remember hanging up the phone thinking: whew. It started with that phone call of being heard. And then going into the office for day one — being seen. Those two things made me think, okay, this is it.

Dr. Tony Ebel: Pause there, moms and dads. This is not just a chiropractic conversation. When you’re looking for a new doctor or provider to support your child, these first experiences tell you everything you need to know. Put it on their staff. Most of medicine works like this: they gather your name, your child’s name and birthdate, insurance information. There’s no advocacy, no connection. It’s sterile and non-human.

You knew what you were getting — a team that would listen, empower you, and work with you to get Caden moving forward.

“It started with that phone call of being heard, and then going into the office for that day one — being seen. Those two things told me: this is it.” — Crystal Villalobos

Regression, Seizures, and the Sandhoff Diagnosis [20:00 – 36:00]

Crystal: We started care in May. That same month, over Memorial Day weekend, we had Caden’s first round of MRI and EEG testing. I had been concerned about absent seizures since around his first birthday, but hadn’t mentioned it because they weren’t happening daily. The pediatrician told me absent seizures don’t typically happen until ages three or four — so it probably wasn’t that.

That summer, Caden went from sitting freely and playing with both hands to prop sitting. He was backtracking. He could no longer support his head. There was a lot of alarming regression, especially in gross motor function. I brought it up to neurology again and again. Their response: we’ll revisit in six months when we see you in person.

Dr. Tony Ebel: At 12 to 18 months, the amount of neurological development happening per minute in a child is more than we experience per day as adults. Six months of “watch and wait” at that age is not an inadequate approach — it’s a dangerous one. You’re missing key milestones and key windows where you could vastly improve a child’s neurological quality of life.

Crystal: I wasn’t taking no as an answer. I sought a second opinion, and that neurologist actually listened. He said this was a far bigger problem, beyond his area of expertise, and recommended we see a specialist. I walked into the chiropractic office full of tears because I knew it was serious.

But I left with a smile on my face. Dr. Tony told us, “We’re going to pray hard that this isn’t something genetic, but if it is, we’re going to give Caden the best quality of life he could possibly have.” As parents, all we want is for our children to be comfortable in their body and truly be given every chance at life.

Dr. Tony Ebel: Seizures are a deep, multifaceted neurological dysfunction. They affect everything from vagus nerve function to cerebrospinal fluid metabolism. Once you alter neurological function to that degree, you alter everything the nervous system controls. You have to get to the root dysfunction neurologically and rebuild, restore, and reorganize it.

In Caden’s case, with what he’d been through at birth and the genetic load of Sandhoff’s, he’s got a more significant headwind — more stress coming at him, and he can’t hold adjustments and development the way we’d ideally hope. So it becomes a neurological math equation: he’s been through all of this and is up against all of this genetically, so he needs more of us. More adjustments. That’s it. That’s the math.

Crystal: His seizures at the beginning were terrifying. I can’t tell you how many times I thought he was lifeless on our living room floor. The side effects of the medications were devastating — he was sleeping 18 to 20 hours a day. I messaged the doctor saying, I feel like this is part of your diagnosis process. My biggest concern was how tired and lethargic he was. We weren’t able to do any of his therapies.

Dr. Tony Ebel: You had two negatives: you were not getting the first job done of stopping the seizures, and you had a whole host of side effects that were causing his delays to get worse and his quality of life to fall. If he can’t do therapies, he can’t do life.

Finding Her Voice: Intensive Care and a Turning Point [36:00 – 41:00]

Crystal: That’s when my voice got really loud. I was upfront — I said, I don’t feel comfortable with more medications, especially with how much he was sleeping. I brought up that we were seeing a neurologically-focused chiropractor. It took two years before they started recognizing and asking questions about the chiropractic care Caden had been receiving.

It took all of those negative experiences to give me the voice I needed.

Once we started the intensive — twice a day — we saw great positive changes. Caden is currently on one seizure medication at a very, very minimal amount, below the therapeutic dose. His seizures happen very seldom, and they’re gone within three seconds.

Dr. Tony Ebel: That’s how you win any neurological battle. You can’t shut down the seizures by suppressing the nervous system. You win by building neurological restoration, resiliency, and adaptability back up.

If you’ve taken your child with a genetic disorder, epilepsy, autism, or a rare disease to a chiropractor, and they haven’t told you how often your child needs to be adjusted — do what Crystal did. Get involved. Advocate. Find the team that will tell you the truth about what your child needs and build a plan to get there.

Neurologically-Focused Chiropractic Care helps a child move forward, build resiliency, and reorganize the nervous system. And for the rare disease and genetic community, it holds off a whole host of medications and interventions they said your child would need forever in high doses. Caden has defied expectations significantly.

“His resiliency, his neurological adaptability — that’s how you win any neurological battle. You have to have neurological restoration, resiliency, and adaptability built back up.” — Dr. Tony Ebel

Connecting the Sandhoff Community to Hope [41:00 – 56:00]

Crystal: I do this for all the other kids out there going through these day-to-day challenges — and for their parents too. I want families to experience what Caden has experienced. The miracles that happen within these walls. I connect instantly with the families and we stay connected after they leave.

One of the most recent intensive families we had was a little girl named Scarlet. When they came from California, they had never taken her out in public. She was a little over a year old and had spent most of her first year in hospitals. While they were here for the intensive, I got them to go out to dinner. Then I received a text from her mom once they returned to California — she said, “Thank you for showing us what’s possible.”

And it got even bigger than that. They traveled internationally. Scarlet got to meet family members for the first time. Imagine having a child and knowing they may never be able to meet certain family. That is huge.

Dr. Tony Ebel: That’s immeasurable. And that’s what we’re saying with these cases — whether it’s genetic, rare disease, or an intensive program. We’re not saying they’ll get adjusted for two weeks and run home with no seizures. We’re saying they’ll do things everyone told you they couldn’t do. Things that will open doors to meeting family, traveling internationally, going to the park. Things that will make your child’s life, and your life as their parents, significantly better.

When we think of the child struggling, we think of the family struggling. And when we think of them struggling, we swing the pendulum to the other side: where could they be that no one else has told them they could get to yet? Then we build a care plan — bit by bit — all the way through.

Crystal: As parents, we are our children’s voice. And you truly are the expert on your child. Time and time again being dismissed, being punted, you build this innate gut feeling — and you’ve got to run with that. When things didn’t work out, or when things got worse following what they recommended, that’s when I really found my spark.

There Is Hope After Diagnosis [56:00 – end]

Crystal: I just want to remind you — no one could have prepared you for what you’re going through or what is to come ahead. But you are the rockstar parents that you are. There is hope after diagnosis.

Think about on a day-to-day basis, all the things you didn’t get done. Then look at the grand scheme of things and think about all the things you did. Your child is still here. Your child is still living and breathing because of you.

There are things — things you can’t fathom right now — that are possible for your child and your family. Zebras exist. Rare is real. In the world of rare disease, doctors are going to view your child for their diagnosis. But you, as the parent, are their advocate. And you will lead them to all they can imagine and more, and give them the life they truly deserve.

Dr. Tony Ebel: Share this episode specifically with families you know are battling rare diseases. Use this podcast, this tribe, this PX Docs platform to help them through the storm. Like, subscribe, download, leave a review, blast it on social media. Get it to families who need this message of hope, answers, and drug-free help.

Crystal — you are one of the most impressive, courageous, world-changing humans in my life. We’re going to keep moving forward together.

“Zebras exist. Rare is real. In the world of rare disease, doctors will view your child for their diagnosis — but you as the parent are their advocate, and you will lead them to all they can imagine and more.” — Crystal Villalobos

Frequently Asked Questions

Can chiropractic care help a child with a rare genetic disease like Sandhoff disease?

Neurologically-Focused Chiropractic Care doesn’t cure genetic diseases like Sandhoff disease, but it directly addresses the neurological dysfunction that compounds the condition. By rebuilding nervous system resiliency and adaptability through targeted adjustments — especially to the upper cervical spine and brainstem — children in rare disease cases can experience reduced seizure frequency, improved motor function, and better overall quality of life. Caden’s case, detailed in this episode, is a documented example.

What is Sandhoff disease and how does it affect a child’s nervous system?

Sandhoff disease is a rare, progressive genetic disorder caused by a deficiency of beta-hexosaminidase enzymes, leading to toxic buildup of gangliosides in the brain and spinal cord. It causes severe nervous system dysfunction — including gross motor regression, seizures, and loss of developmental milestones. Conventional medicine has no cure and typically offers only seizure management through medication. Neurologically-focused chiropractic approaches the condition by reducing the compensatory stress load on the nervous system and maximizing whatever adaptive potential the child retains.

Can neurologically-focused chiropractic care reduce seizure frequency in children?

Dr. Tony Ebel explains that seizures represent “a deep, multifaceted neurological dysfunction” affecting vagus nerve function, cerebrospinal fluid metabolism, and autonomic regulation. Rather than suppressing the nervous system with more medication, the goal of chiropractic care is to rebuild neurological resiliency and adaptability — which reduces the threshold at which seizures fire. In Caden’s case, intensive twice-daily adjustments allowed his family to reduce his medication to below the therapeutic dose, with seizures now resolving within three seconds when they do occur.

When does a child with a rare disease need intensive chiropractic care?

Intensive care — adjustments twice daily over a multi-week period — is typically recommended when a child has significant neurological dysfunction, a high genetic or toxic burden on the nervous system, or is not holding the positive changes from standard care frequency. As Dr. Tony Ebel explains: “It’s a neurological math equation — he’s been through all of this and is up against all of this genetically, so he needs more of us.” Families travel from across the country and internationally to participate in these intensive programs.

How do I advocate for my child when doctors dismiss my concerns?

Crystal Villalobos’ story in this episode is a detailed roadmap for parental advocacy. Key steps that worked for her family: track regression actively and report it specifically to medical providers; seek second and third opinions when you’re being dismissed; bring your child’s chiropractic provider into conversations with neurologists; and document everything in writing. As Dr. Tony Ebel says, your ability to advocate is directly tied to your child’s healing potential. You are the expert on your child — even when the medical system doesn’t treat you that way.

Where can I find a neurologically-focused chiropractor who works with rare disease children?

The PX Docs Directory lists pediatric chiropractors trained in Neurologically-Focused Chiropractic Care across the country. For families dealing with severe or complex cases — including rare genetic diseases, epilepsy, and significant developmental delays — Dr. Ebel’s practice outside Chicago also offers intensive programs for families who travel.

Resources & Related Content

Find A PX Doc

Welcome to PX Docs. The place to find Hope. Answers. Hope. for you and your family.