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Seeing IBD Through the Eyes of Littles

Take a moment to think back to the moment when you were told you had Crohn’s disease or ulcerative colitis. How old were you? How did you take the news? How did you handle this monumental life change?

Personally, I was diagnosed with Crohn’s when I was 21 years old. According to the Crohn’s and Colitis Foundation as many as 80,000 kids in the U.S. battle IBD. I recently connected with a four-year-old girl named Penny who was diagnosed seven months ago with Crohn’s. It’s humbling and devastating to think of children having to face these brutal diseases, not knowing what this means for the rest of their lives.

For those of us who are adults, we can be empowered and inspired by these courageous little fighters.

Their innocence and naivety allows them to take on the disease in a completely different way. For many diagnosed at such a young age, it’s all they will ever know. Penny receives Entyvio infusions, her mom told me she was recently asked how it went (the same day she received it)…she didn’t even remember! She plays with toys, colors and puts puzzles together as the biologic drug runs through her veins. Not a care in the world.

As a new mom myself, I can’t imagine how heart-wrenching this must be on parents and caretakers. It’s one thing if you can articulate your pain and experience, it’s another when you can’t talk or just say ‘mommy, my tummy hurts.’

It makes you wonder if it’s just a typical stomachache or if a flare is festering.

When you see the light in a child’s eyes and their carefree way of going about their day, despite their diagnosis…it’s a good reminder to us all that our diseases don’t have to strip us of our spirit. We can all be like Penny and the thousands of other kids who don’t let their illness sideline them. They run outside and go to camp and push through the pain to be like the rest of the kids. They show us how to be resilient. They may be small, but we can still look up to them.

As adults we know how exhausting, excruciating and debilitating IBD is. Couple that with all the medications, medications with a laundry list of side effects. Side effects that can take a long term toll. Now imagine what it’s like to be on these same drugs for decades upon decades. It’s a brutal reality.

A reminder of the importance of finding a cure and not giving up hope.

Those of us in the IBD community need to stick together and lift one another up. You get it. You can relate. I promise if you take the time to connect with those who live it, you will find immense comfort and the support will help you through the hardest times in your disease journey.

So the next time you’re rocking in the fetal position on the couch or staring at the bathroom wall wondering ‘why me’… think of the kids like Penny…who don’t know any different. The kids who are too young to comprehend what it means to have a chronic invisible illness. Let their strength inspire you to push through and fight for those feel good moments and days.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    12 months ago

    So heart-wrenching to think that a four-year-old has to go through such an awful disease. I too was diagnosed at 21, and I can’t imagine being so young, dealing with the symptoms.

    Thank you for reminding us that such a wide scope of people are hit with IBD, and we can always get inspiration from their stories.

    Always dancing,
    Elizabeth (team member)

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