On Rhys’ very first day home from the hospital, his Mom and Dad knew something wasn’t right. This is Rhys’ story in his Mom, Colby’s words.
We hadn’t been parents in a long time. Our older two are grown, then just 18 and 22, and here we were starting over. Rhys was beautiful and perfect, but something felt off. He was having far more bowel movements than other babies, upwards of 17 times per day. We were told it was likely a milk protein allergy. So, I eliminated dairy, found a breast milk donor counties away, and drove six hours round trip to make sure he had what he needed. I was determined to fix it.
Then the diapers began to have blood. Still our pediatrician was incessant that it was milk protein allergy. She insisted that I had continued to consume dairy even though I wasn’t.
At Rhys’ 15-month checkup, by happenstance, we saw a different provider. I showed the nurse practitioner a photo and asked, “Do you think this is normal?” She took one look and said, “Oh my God. That’s Crohn’s, colitis, or cancer.”
Everything changed in that moment. She sent us directly to check his blood. His hemoglobin was 6.9. She instructed us to go immediately to Nicklaus Children’s Hospital where Rhys was admitted and received three blood transfusions.
Rhys was eventually diagnosed with severe very early onset Crohn’s disease at just 15 months old. He spent nearly nine months of 2023 in and out of hospitals. He endured countless procedures, medications, TPN, and eventually a feeding tube. Because of the pain and medical trauma in those early months, he developed ARFID and now relies on a feeding tube for nutrition.
What I didn’t expect was how hard we would have to fight, not just the disease, but the system. Insurance delays. Prior authorizations. Dismissals. Waiting.
There’s ZERO FDA-approved medications for children under six with IBD and our insurance company likes to use that as grounds for a denial each and every single month. So, I became the loudest voice in every room. I sent letters. I made calls. I refused to let “no” be the final answer. This fight led me to the Crohn’s & Colitis Foundation, not just for support, but for action.
My husband, Rhys and I participate in the annual Take Steps Walk Miami. Our first year we had to back out due to Rhys being admitted. The second year, hand-in-hand with his doctor and nutritionist, surrounded by family and community, Rhys got on stage as the honored pediatric hero. Those moments are more than symbolic. They are proof that even in the hardest seasons, we are not fighting alone. We continue to participate each year.
Last September, Rhys and I traveled to Washington, D.C. for Day on the Hill. I shared his story directly with lawmakers, advocating for stronger protections, better access to care, and continued federal funding for IBD research. Walking into those offices with my son, the reason we were there, was so powerful. Lawmakers didn’t just hear about IBD. They saw the face of a child living with it. Rhys is now four-and-a-half years old, he’s got 42 infusions under his belt, he is still 100% g-tube dependent, but currently in remission with Crohn’s.
Showing up and participating in these sorts of initiatives is deeply personal for me. There has to be a better experience for the families coming behind us, because they are coming. It may not change everything for Rhys, but it can change the path for the next child, the next parent, the next diagnosis.
We show up so that one day, a parent won’t have to hear those words.
We show up so insurance delays don’t cost children precious time.
We show up because a world without IBD isn’t just a slogan.
It’s our son and we do everything within our power to fight this disease.
💚💙 Colby connected with ImproveCareNow through the Parent/Family Advisory Council (PFAC), a supportive group of IBD parents and caregivers, committed to enhancing the quality of life for the young people and their families who live with IBD. In partnership with the ImproveCareNow Network and the local Care Center teams, the PFAC empowers patients and their families to thrive in their lives by improving the quality and outcomes of IBD care.
ℹ️ Learn more about the PFAC and get connected by visiting improvecarenow.org/connecting-parents
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (pediatric patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
