Posted by ImproveCareNow™ on November 11, 2026
Roughly a decade since her children were diagnosed with Crohn’s disease, Leah took the stage at our Fall Community Conference to deliver an inspiring Parent #IgniteTalk. Her story highlighted the impact of dietary therapy and the transformative power of finding a community when facing a pediatric IBD diagnosis. Leah shared about her children’s 2016 diagnoses (within a couple months of each other), her family’s decision to adopt the therapeutic Specific Carbohydrate Diet (SCD), and how cooking classes, camp, and connection ultimately shaped their journey. Deeply moving and filled with hope, Leah’s story is a reminder that taking the journey alongside others, as part of a community, has the power to change lives.
Be inspired by Leah's #IgniteTalk 🔥
Sometimes in life there is a pivotal moment that divides everything into before and after. You find yourself looking at old family pictures and instinctively sorting them into two categories, before...and after. For my family, that moment came in 2016.
We were sitting in Dr. Suskind's office at Seattle Children's when the door opened and an entire team walked into the room. As a pediatric nurse who had once worked there, I knew exactly what that meant. My stomach dropped. But in that instant, I wasn't the nurse anymore. I was a mom. I heard the words, "Your son has Crohn's disease." I don't remember much after that. My mind was spinning. I think I completely blacked out for a moment, going on autopilot as I tried to keep my eight-year-old son, sitting on my husband's lap, and my five-year-old daughter, sitting on mine, occupied while the team continued talking. As they explained the next steps, my mind suddenly snapped back to one terrifying thought.
"Wait...what about my daughter?"
She had struggled with GI issues for years and had abnormal lab results that no one could fully explain. In a matter of minutes, our family went from searching for answers about one child to realizing we were likely facing two diagnoses instead of one. This was confirmed when she had scopes 2 months later.
Looking back, the clues had always been there. Severe reflux since birth. Food intolerances. Endless vomiting, diarrhea, severe constipation, constant doctor appointments. Tests that never quite explained what we were seeing. More than once, I was told, "They'll grow out of it." But parents know something science can't always measure. We know our children. Again and again, I kept coming back to that feeling that something wasn't right.
When Dr. Suskind mentioned a dietary therapy called the Specific Carbohydrate Diet or SCD that he was studying, I didn't hesitate. My children had been sensitive to food since the moment they were born. Their bodies had been telling us, in one way or another, that food mattered. So we said yes. We walked out of the hospital overwhelmed, carrying binders of information and wondering how we were ever going to make this work.
We drove home in silence that day. We had no idea what our future would look like. Would our kids be healthy? Would they be able to play sports? Go to camp? Travel? Would they just get to be kids? We didn't know it then, but we were about to discover something that would become just as important as medicine.
I thought I was joining a Facebook group about a diet called SCD Families. Instead, I found a community and hope. Moms who answered frantic messages when I couldn't figure out a recipe. Moms who celebrated every good lab result. Friends who reminded me, on the hardest days, that tomorrow could be better. They weren't just helping us feed our children. They were helping us carry the weight of this disease. Many of these people are still my dear friends today. My children both responded to the new diet right away with improving lab results. We knew we had to keep going, one day at a time.
People often say that the diet is restrictive. I learned to see it differently. The diet isn't restrictive. The disease is. The diet became a tool that gave my children the chance to simply be kids. From playing hockey and ballet, to swim lessons and competitive robotics, sleepaway camp, and birthday parties—they got to be kids. They got to spend their childhood being kids, not being patients.
What truly changed our journey wasn't just a treatment. It was community.
Dr. Suskind believed that families shouldn't have to figure this out alone. He brought people together in ways that extended far beyond the clinic. There were SCD cooking classes in the hospital basement. Conference snack tables filled with SCD-friendly food. The local Camp Oasis serving SCD food for the week. Park meetups and group texts that became lifelines on the hardest days. Those families became our support system. They taught us recipes. They celebrated good lab results. They carried us through the difficult moments. They reminded us that hope grows best when it is shared.
Imagine being 10 years old and walking into a room filled with other kids who not only have IBD, but who also eat the same way you do. Living with a chronic illness can feel isolating. Adding a special diet can make that isolation even greater. These cooking classes and Camp Oasis gave my children something incredibly important. The knowledge that they were not alone.
The older teens became role models they could look up to. They could see how others navigated school events, social situations, traveling, playing sports, and attending camp while living with IBD. What started in the basement test kitchen of Seattle Children's with a teen chef and Dr. Suskind continued to grow. It moved into local restaurants and cooperative grocery stores with professional chefs. Kids walked through farmers' markets learning about ingredients and cooking. Parents had space to gather, share experiences, and support one another. When COVID brought those in-person gatherings to a stop, our Facebook group adapted with online cooking classes while we were all at home.
As my children became teenagers, they missed these classes and wanted to give back. They wanted to help other kids who were walking the same path they had walked. Dr. Suskind once again generously volunteered his time to make that possible. This time, my son led the cooking portion with the kids, while I spent time connecting with the adults. I can't fully explain what that meant to our family. The children who once needed support were now becoming the people who provided it.
This past spring, another PFAC member, Maria, and I collaborated with the GI Nutrition Foundation to put on an online IBD cooking class. We wanted to create the kind of space that had made such a difference for our own family. To bring people together, provide education, and remind families that they are not alone.
This is what continues to inspire me about ImproveCareNow. It recognizes that improving pediatric IBD care is not something one person or group can do alone. It happens when families, patients, physicians, researchers, dietitians, nurses, psychologists and care teams come together, share knowledge, and learn from one another. None of us can change the future of pediatric IBD alone.
I still look at our family photos and see before and after. But today, when I look at those "after" pictures, I don't see the disease first. This year marks ten years since those words changed our family's life. Today my children are healthy. They are thriving. They are building lives that are defined by who they are, not by Crohn's disease. When I look at them now, I don't see everything this disease has taken. I see everything this community has made possible.
There was a time when I thought our story was about Crohn's disease. Now I know it is really a story about what becomes possible when people choose to walk alongside one another. Because community doesn't just improve care. It changes lives.
Want more 🔥 ignite in your life? Find our fabulous Ignite Talks from patients, parents & clinicians 💚💙