Rhys’ story begins with us always knowing something wasn’t quite right with his health. Even from our very first night home with him as a newborn. He always gained just enough weight to keep the Doctor’s satisfied. Unfortunately, his bloodwork would tell a different story. At his 18-month check, his pediatrician checked his hemoglobin, and the results sent us to the ER, where Rhys was admitted and remained for 1 of his 9 admissions since this journey began.
Following scans and ultrasounds, his medical team decided it was in his best interest to have a colonoscopy. He was diagnosed with VEO IBD or Very Early Onset Inflammatory Bowel Disease/ Crohn’s Disease. Rhys was admitted and spent a couple of weeks in the hospital. During this time, I found the Crohn’s and Colitis Foundation.
The Crohn’s and Colitis Foundation provided us with research on VEO, along with providing us information for a patient care advocate. Our patient care advocate has been so helpful to us because unfortunately with VEO, what we run into frequently is the lack of FDA approvals for many of the drugs used to treat this disease. There currently is zero FDA approved treatments for children under 6. Rhys is just 2 years old. Rhys currently is on a biologic drug called Remicade. He receives this infusion every 4 weeks. His Crohn’s diagnosis has caused a few other issues for him such as ARFID and he is gastrostomy tube (g tube) dependent.
As Rhys’ parents and caregivers, we quickly discovered how much we had to fight for treatment, insurance companies, and for remission, that's when Rhys’ Road to Remission was born. We launched an Instagram and TikTok Page. Through our pages, we have connected with so many. It is our mission to continue the fight in advocacy, treatment, remission, and ultimately, a cure.
Rhys is still too little to understand his disease and diagnosis. We as parents do try to read to him and tell him about it through books and play therapy. We encourage him to do all he can and try not to allow this to limit him. His disease doesn’t define him, but it does make up for a large portion of his life. We are often reminded why advocacy, awareness, and a cure are needed.
Rhys isn’t in remission yet, but we remain hopeful that his time will come. He is in a much better position than he was a year ago and has already overcome so much. We don’t know why Rhys has Crohn’s Disease, but we do know that he is a Warrior and truly an Honored Hero. We are proud as a family to participate in the Take Steps Walk and honored to walk along all brave patients, caregivers, families, and healthcare professionals. The Take Steps Walk is so important as it gives an opportunity to spread awareness and really involve the community in what is going on and how they can help!
Rhys is 2 years old. He loves garbage trucks, playing outside, collecting rocks, playing with his friends, dinosaurs, cars, reading books, and going to the Berry Farms.
