Our Journey with Ella and Charlotte
When you become a parent, your biggest hope is for your children to be healthy and happy. You brace for the usual bumps and scrapes, maybe even a broken bone or two. But nothing truly prepares you for the words, “Your child has Crohn’s disease.” And in our case, we’ve heard those words not once—but twice.
Both of our daughters, Ella (13) and Charlotte (9), have been diagnosed with Crohn’s disease. It’s been a journey of heartbreak, strength, resilience, and learning—for all of us.
Two Diagnoses, One Family
Ella was the first to be diagnosed in 2022 at 10 years old. She had always been energetic and full of life, but we started noticing that something wasn’t quite right. She was losing weight rapidly, frequent toilet visits, experiencing fatigue, and missing more school days than usual. After many doctor visits, tests, and hospital stays, we finally had an answer: Crohn’s disease. It was a relief to have a diagnosis, but a scary one.
As we were finding our rhythm with Ella’s treatment and trying to adjust to a “new normal,” Charlotte began showing symptoms too. At first, we told ourselves it couldn’t be the same thing. But deep down, we recognized the signs. And again, after countless appointments and procedures in April 2024, at 8 years old, we were delivered the same diagnosis.
Two children. One disease. A thousand emotions.
What Crohn’s Looks Like in Our Home
For those who don’t know, Crohn’s disease is a chronic inflammatory bowel disease (IBD) that can affect any part of the gastrointestinal tract. It comes with pain, fatigue, dietary restrictions, and often, invisible symptoms that don’t show on the outside. It’s a lifelong condition with no known cure—only management.
In our house, Crohn’s looks like:
- Daily medication schedules and 6 weekly Infusion hospital visits
- Reading nutrition labels more than we ever thought we would
- Emergency bathroom runs and sleepless nights
- Daily stomach pains and fatigue
- Brave girls who smile through pain and fight battles most kids don’t even know exist
Ella and Charlotte: Warriors in Every Sense
Despite everything, Ella and Charlotte are nothing short of amazing. Ella is strong-willed, increasingly resilient and tries to live a normal life with her illness. Charlotte, on the other hand presenting with different symptoms to Ella is endlessly curious, and has a way of making everyone around her feel a little lighter—even on tough days.
Watching the two of them go through flare-ups, infusions, and hard moments is heartbreaking. They shouldn’t have to be this strong—but they are. And we’re endlessly proud.
What We’ve Learned (And Are Still Learning)
Living with Crohn’s in the family has taught us so much—not just about medicine and health care systems, but about empathy, resilience, and the power of an excellent team of specialists.
Why We’re Sharing This
We’re sharing our story not for sympathy, but to raise awareness. Crohn’s disease affects millions of people—including children. It can be invisible, misunderstood, and misdiagnosed. By talking about it, we can shine a light on what it really means to live with IBD.
We also want other families going through this to know: you are not alone.
There is strength in shared stories, and healing in being seen.
To Ella and Charlotte
Your strength humbles us. Your courage inspires us. And your love keeps us going every day.
This journey isn’t easy, but we’re in it together. Always.