When Shannon Stark’s daughter was diagnosed with multiple sclerosis at fourteen, the conversation quickly turned to fear and pressure to choose a drug. In this episode of The Hope & Health Podcast, Mathew Embry talks with Shannon about raising a child with MS and exploring diet, gut health, and environmental factors as part of her care. She shares how advocacy and leaving no stone unturned helped her daughter stabilize. This conversation speaks to parents navigating a child’s complex health journey.
Welcome to Hope and Health. Today we're talking to Shannon Stark, a registered holistic nutritionist and wellness educator whose daughter Romy was diagnosed with multiple sclerosis as a teenager. Shannon shares the challenging journey of advocating for her daughter, implementing radical diet changes, firing her neurologist, and ultimately facing the difficult reality when her daughter went off the protocol years later.
Two years before Romy's diagnosis, Shannon attended a conference and met Dr. Terry Wahls, whose own MS recovery story through nutrition has inspired thousands. When Romy was diagnosed at 14, Shannon felt devastated, even passing out on the hospital floor. But when she woke up, she knew she had a plan.
For those unfamiliar with Dr. Terry Wahls, she's a physician who was diagnosed with multiple sclerosis and developed a nutritional program that led to her remarkable recovery. Shannon's prior knowledge of this approach would prove crucial.
In July, Romy started experiencing numbness and tingling down her arm. Like most parents, Shannon initially thought it was a pinched nerve. That symptom went away, but by the end of August, Shannon noticed Romy's eyes weren't working in unison. When she asked about it, Romy casually mentioned having a bit of double vision when looking to the left.
Something in Shannon's gut told her this was deeper, more neurological. Despite others saying not to worry, that it was just kids spending too much time on their phones, Shannon knew they had to investigate. She even yelled at the ophthalmologist who tried to dismiss her concerns, admitting it wasn't her best moment, but her instincts were screaming that something was wrong.
Shannon created a video of Romy's eye movements. When she asked Romy to look left, both eyes moved left. When she asked her to look right, only one eye moved right. This video became crucial evidence she repeatedly showed to medical staff who initially tried to send them away.
Living two hours north of Toronto, Shannon drove Romy directly to the emergency department at Sick Kids Hospital. After showing them the video multiple times, they finally got serious attention. Three days later, they had a diagnosis.
The diagnostic process was fear based from the start. Being at appointments felt upsetting rather than healing. The neurologist presented five medications and told them to go home and pick one. Shannon had some research background, but researching medications for your own child is a completely different experience. It was fear, a lot of fear.
At one particularly memorable appointment, with the neurologist surrounded by her team with clipboards (a really intimidating setup), Shannon was still saying no to medications. She never said a flat refusal, just "not right now."
The neurologist then turned and said, "Well, the young boy that was in here before you, his parents decided not to give him medication and now he's had an event and he's permanently disabled."
Shannon's response was perfect: "What were the parents doing? If they weren't doing medications, were they still taking him to McDonald's? Were they looking at diet? Were they looking at all these factors?"
When she asked that question, the doctor got defensive, saying she doesn't talk about other patients. Shannon's reply: "Well, you just did." When it was in the neurologist's best interest, it was okay to talk about other patients, but not when Shannon wanted actual information.
Each time Shannon said no to medications, the neurologist stopped coming to appointments, sending other people instead. Shannon finally wrote a letter detailing all her research on every medication offered, each with nine pages of side effects and no proof it would stop the disease. She told them to read the letter in Romy's file instead of asking the same questions repeatedly.
As Shannon put it, any decision you make carries risk. She decided to take the path with the least side effects.
Having to make decisions for someone else's body, especially your child, is probably the worst thing as a parent. Shannon isn't a controlling person and knew what she would do based on her gut. She had to apply that to Romy and hope for the best, knowing they could always change course if something wasn't working.
It was devastating, but she put on her big girl pants and got to work. They looked at everything in their environment, not just food. Where was the Wi-Fi set in the house? Where was the modem? What were stress levels really like for a teenager? There were so many things to examine.
Diet was absolutely first because food comes in every day, three times a day or more. Then they looked at environmental factors. The smart meter on the house, the modem location. The modem was actually in the basement directly under Romy's bed, under her head. They had to move it to the other side of the house and put it on a timer.
Shannon looked into sleep studies and ended up putting Romy in a hammock. She slept in a hammock for about five or six years because of research Shannon read from Switzerland about the healing effects of rocking beds.
They dug deeper into gut health, then metals and toxins, hormone levels, the whole array. During a chat with Palmer Kippola (another MS recovery advocate), Shannon was listing all the steps she was taking. Palmer was writing them down and asked if Shannon was writing a book. Shannon said no, but Palmer came up with her trademarked "fights" approach: food, infections, gut health, hormones, toxins, and stress. Shannon kept making the list longer with upper cervical chiropractic care and more.
Shannon left no stone unturned when it came to researching for her daughter.
Shannon had already been somewhat paleo, grain free with a little high quality dairy, eating really good foods. The family not so much. Switching Romy over to Shannon's diet was fairly easy, and Romy got interested in cooking, creating incredible gluten free, dairy free meals. She was never deprived.
They implemented Terry Wahls Protocol Level Three: basically meat (quality protein), lots of greens, lots of fruit, all the sulfur vegetables (which were hard for a teenager, so Shannon made soups everyone loved), nuts and seeds, and a few sweets. Romy doesn't have a huge sweet tooth, which helped. Meat, vegetables, fruit, some nuts and seeds, and healthy fats.
There's an important piece Shannon hadn't mentioned initially. Romy was an A student all through school, but at the end of grade eight, her math was falling into the C range. Shannon didn't know if she was dealing with teenage attitude, laziness, or something else. She hired a tutor, but watching Romy with the tutor, she looked like a deer in the headlights, not getting the concepts at all.
This was all before the diagnosis. They got home from Sick Kids, and Romy started the protocol the next day. She also had a lumbar puncture, so she was out for a few days not feeling well.
The next week, Shannon suggested they start catching up on math. Romy sat down and whizzed through it so fast. Shannon checked it all and it was all perfect. She asked Romy what changed. Romy's response: "I don't know, Mom. I just feel like my brain woke up."
That was just diet, nothing else at that point. The tingling and eye issues had actually cleared up before they even got to Sick Kids, which is why there was a fight to get the diagnosis. The medical staff thought she was fine now, but Shannon had witnessed two things and knew something was coming if they didn't investigate.
Shannon worked with a holistic nutritionist who did live blood analysis with Romy. They saw a lot of chemicals, parasites, and other issues in her system. Shannon started with gut health, knowing Romy's diet was good but wanting to ensure she was digesting, absorbing, and assimilating all the good food.
Romy had leaky gut. As Shannon explains, people can have leaky gut without autoimmune disease, but if you have autoimmune disease, you have leaky gut. Fixing that was one of their first steps.
Hair analysis revealed Romy was loaded with heavy metals, some off the charts. They spent about nine months on metal detoxing: mud baths, foot baths, different supplements. Castor oil packs were huge for Romy because she had liver issues.
It took time, but kids are resilient. Romy was responding pretty fast to everything they were doing.
Shannon decided she wanted to take Romy to the American Center for Biological Medicine in Arizona. She'd heard a lot about Dr. Dickson Thom, who was a dentist and is now a naturopath. It wasn't taking her to Spain or anywhere requiring enormous funds. Shannon saved for about three years, then took Romy to Arizona for a week in the clinic.
Romy was 17 at this point, three years after her diagnosis at 14. She was in the clinic from 8:00 a.m. until 5 or 6:00 p.m. doing different treatments for five days. Shannon wasn't allowed in because they really focus on the nervous system and don't want the mom there potentially upsetting the child.
They found liver flukes and gave Romy injections into her liver to eliminate these parasites. They did sound bed therapy, hydrotherapy, IV therapy, ozone therapy, and many other treatments. Shannon just got a piece of paper saying what Romy was doing.
Looking into immune suppressant drugs led Shannon to immune modulating drugs instead, things to keep the immune system happy without totally suppressing it. She started reading about low dose naltrexone (LDN).
Normal dosing is 50 milligrams, used for drug therapies. It blocks opioid receptors, making the body think it needs to make more, which helps with pain and autoimmune conditions. Low doses are 3 to 5 milligrams. Her naturopath in Arizona prescribed it, so they got a lot to bring back with them.
Getting more became challenging because you need a diagnosing doctor. By this point, Shannon had fired Romy's neurologist, which was a scary thing to do. Romy didn't have a neurologist, so her doctor in Arizona became their prescribing physician.
How do you fire a neurologist? Shannon describes going into appointments and leaving scared, really questioning what you're doing in life with this child. Then going to the holistic nutritionist or naturopath and leaving hopeful. That difference in itself, leaving fearful versus happy, isn't healthy.
Shannon finally told Dr. Thom she didn't want to go to the neurologist anymore. His response: "Well, don't." It was that simple.
The neurologist's office called wanting to do an MRI with contrast. Shannon said no more contrast. Romy had only had contrast twice and reacted badly, throwing up and not doing well. Shannon had even read a study showing contrast causes lesions.
When they insisted she had to do contrast, Shannon said to cancel the MRI. They put her on hold and came back saying they could do the MRI without contrast. Shannon thought so.
They kept trying to make appointments. Shannon finally said, "We won't be coming there anymore. We're good. Thank you." And hung up. You have to be really assertive. You're calm on the outside, but your heart's pounding. You just have to advocate for them and put them on a good path.
Shannon was scared about potential consequences. She'd heard stories from the States about authorities taking children and giving them cancer treatments against parents' wishes. Could that happen in Canada? How far could she go against the grain before someone stopped her? She just kept moving forward.
Shannon had two completely different experiences. With the neurologist, it was fear based, pushing toward drugs. With the naturopath, she left with hope and a sense that Romy would have an incredible future.
Once Shannon made the decision to fire the neurologist, it was final. There was fear leading up to it, but once done, it was behind them and they never thought about it again. They worked with the naturopath 100%, Romy was getting results, and she was happy and healthy.
Romy was pretty committed and stayed on the protocol for about eight and a half years. She was all in, believing this was the way to go. Then came more socializing, college, university. Shannon started noticing weird headaches or optic neuritis. When she asked Romy what was going on, Romy admitted she wasn't following the protocol as strictly.
Romy started having a few relapses and even stopped taking her supplement protocol. This was super hard because Romy was featured in Terry Wahls' cookbook as a Wahls Warrior success story. A lot of people looked to her thinking, if this kid can do it, I can do it. If a teenager can do this, I can do this.
For Romy to change course and start having relapses was difficult. About a year and a half ago, she had a big relapse. She ended up in the hospital, couldn't use her hands, could barely walk.
Romy had been hiding her dietary lapses from Shannon because she knew Shannon would be upset, not controlling or angry, but upset because Romy understood the amount of work they'd both done together.
When Romy finally started talking about it, Shannon pieced together that Romy could go about six months off the diet before symptoms appeared. The big relapse came after about eight months completely off protocol.
She's an adult now, no longer at Sick Kids but at a hospital in Barrie. They put her on five days of high dose steroids. The doctor said she might not get function back. Devastating. She did recover function, thankfully.
Romy got a new neurologist. Shannon doesn't go to appointments anymore; that's Romy's decision now. But Romy told Shannon that this new neurologist said the decision Shannon made not to put Romy on medications 10 years ago was the right decision. Hearing that from a neurologist gave Shannon some validation.
The new neurologist is now giving Romy low dose naltrexone, which Shannon is happy about. But Romy also picked a disease modifying medication and has been on it for a year.
Shannon didn't do anything in front of Romy, but she went to her room and cried, feeling like she'd failed her daughter. Then she realized this is Romy's body, Romy's choice, and Shannon just has to be supportive.
She focused on the fact that she did her best. This is just a step off the path Shannon wanted Romy to be on, but Shannon knows Romy can step back onto it. It's early days, only a year and a bit on medication. Romy is 24. In two years, she could say she doesn't want to be on it anymore and wants to go back to the protocol. She's an adult who can make that choice. At least she has the information and knows the option exists.
When people ask how Romy is doing and Shannon says she's on medication now, people are taken aback. Shannon feels like she failed them. But it's not that the program didn't work. Romy wasn't doing the program. She chose to stop.
Shannon almost feels shame, like she's let people down. This is precisely why this conversation is so important. We need to talk about how hard it is to stay on these programs long term.
When you're diagnosed with something as a teenager, the long term consequences are hard to articulate. How it disrupts adolescent years, the things lost, the experiences missed, the difficulty relating to peers the same way. Suddenly in your 20s and 30s, you might try to relive those lost years, and that can have consequences on long term health.
Shannon did things most adults can't do, from grade nine through eight years of strict protocol. That's remarkable. Shannon has come to respect Romy's decision and understand how hard it is. She thinks Romy will go back to the protocol as she gets past this phase of life, when it's not about masking symptoms to live like a normal university student.
For parents whose child was recently diagnosed with MS or another chronic illness, Shannon's advice is clear: Always go back and start with food. Look at the diet. Don't look at the big picture. Just bite off a little piece, change that until it becomes habit.
It's not a death sentence, even though that's what it felt like when Shannon first heard the diagnosis. Ten years later, Romy is in university, thriving, happy, has a boyfriend. We're all handed a set of cards to deal with. You work through them.
Take it slow. Don't make rush decisions. Don't act on fear. Don't listen to the fear. That's the hardest one.
Advocating for your child is the biggest importance. They don't know what they're up against. Shannon was trying to save money for Arizona, selling things, doing it herself. Someone suggested a GoFundMe, and Shannon initially refused, saying she wasn't asking for money from other people.
A woman told her: "It's not for you. It's for your daughter."
That reframed everything. Shannon wasn't asking for money. She was advocating for her kid and her health. Do what you can for them.
People started contacting Shannon, and locals would say Shannon helped her daughter, maybe you should talk to her. Shannon thought maybe she needed to do something with this passion. She went back to school, attended the Canadian School of Natural Nutrition, became a registered holistic nutritionist, and started her own practice.
When asked if this was a wakeup call for the whole family, Shannon says absolutely. All their health got better. They worked together, and watching Romy thrive showed them they were doing the right thing. They all got on board to make Romy's life not feel so alien.
Shannon became a big sharer, posting on social media, wanting to get information to other people. There's passion there, maybe driven by anger and frustration, thinking there are other ways out there. Having seen different paths in her own health journey, including spending six weeks in China being healed by a doctor who didn't even touch her, Shannon knew there were other things possible.
Every time she lifted a stone and found new information, she wanted to share it. People don't have to suffer. There are other things to do. The more you share, the more comes back to you.
Just digging and digging, even though they had the Wahls protocol, Shannon thought there had to be more. She found MS Hope, watched a video, and felt empowered. That's what heals people.
She asked Romy if she wanted to watch the videos. They sat at the kitchen table and watched everyone, high fiving each other because they felt they were on the right path, doing the right thing for them. That was almost a decade ago.
Over time, Shannon has matured in her approach. The information is there if people want it. She's stopped pushing it on people. When people come to her, she shares freely. But she's learned that if someone feels hope in a different approach, whether that's chemotherapy for cancer or conventional treatment for MS, that's where their healing will come from. It's what you feel inside that helps you.
It's not all the outside information. The information is there. If people want it, they'll be open to it. If they're not, you hope the best for them and maybe they come around.
All Shannon can do is put the information out there. What individuals decide to do with it is totally up to them. But it's particularly difficult when you're a parent watching your child.
Shannon knows how she feels when she goes off her diet. She wakes up every morning, does her saltwater drink, goes out grounding in the morning sunlight. When she goes off it, she doesn't feel good. It's that simple.
She makes sure what's in her fridge is the only thing she can eat, making it simple when you open the door. It's about reframing: don't focus on all the things you can't have, focus on what you can have and what you can do. Eliminate the negative and make it simple.
This conversation matters because we need to stop feeling shame about the ups and downs of managing chronic illness. Whether it's going off a strict diet protocol, struggling with other aspects of health management, or making choices others don't understand, it's all part of the journey.
When you're diagnosed as a teenager, you lose experiences, struggle to relate to peers, miss out on normal adolescent development. Those losses echo through your 20s and 30s. Understanding this helps us have compassion for the struggles people face in maintaining lifelong protocols.
Romy did incredibly well for eight and a half years, from age 14 to her early 20s. That's remarkable. Now she's navigating young adulthood while managing a chronic illness, making the choices she needs to make for herself. Shannon respects that, supports her daughter, and holds space for the possibility that Romy might return to the protocol when she's ready.
That's what real advocacy looks like: fierce protection and support, combined with respect for autonomy and the wisdom to know when to let go.
