Mason and Alexa’s Story

Unbeknownst to us, our Crohn’s journey began over six years ago. Our then 9-year-old son complained daily in the mornings that his stomach hurt. Over time, we chalked his stomach complaints up to nerves or anxiety. However, three and a half years ago, we knew something was very wrong. Our then 12-year-old son had experienced consistent diarrhea for a month straight. His remaining baby fat was replaced by sunken cheeks and hollow eyes from the 30+ pounds he’d lost. A double scope in August of 2020 diagnosed something we had only considered in passing, Crohn’s disease. We learned it can be genetic, but neither my husband or I have it and we are not aware of anyone in our families who do.  After our son’s diagnosis, we learned of several friends and acquaintances that have been living with Crohn’s disease.

A month after his diagnosis, our son began monthly infusion treatments. He was so brave, enduring the constant pokes of missed IVs and multiple hour injections. He never complained. Just after a year of infusions, his body built up an immunity to the drug. With the help from his doctors, we made the decision to switch medication and begin at home injections twice a month. Like most 13-year-old boys, he could not give himself the injections, so I have been giving them to him ever since. Regular six-month testing showed inflammation, so his dosage was increased to once a week. Even though he was feeling perfectly fine, his most recent biannual tests revealed he is again experiencing inflammation. With the constant changes of this disease, we are pivoting again and working with his doctor to get his inflammation under control. This has shown all of us the value of regular follow up visits and sample testing.

Our story doesn’t end with our son. In November of 2022, our 9-year-old daughter began having diarrhea on and off. The following spring and summer, the frequency of her diarrhea increased. She lost 7+ pounds and 10% of her body weight. I mentioned her symptoms to her pediatrician during her annual appointment this past fall. With her brother’s diagnosis and additional testing, our pediatrician recommended a follow up appointment with our son’s gastroenterologist. After the consultation and some initial denial on our part, we decided to proceed with a double scope in November. She was diagnosed with Crohn’s disease at ten years old. The difference between her and our son is that she is very afraid of shots and needles. We are so very grateful to our doctor and their amazing team for working with us to come up with strategies to help her to overcome her anxiety and fear. She recently began her at home injection treatments. This would not have been possible without our doctor and the Child Care Support team at Boystown. Our son has been a phenomenal older brother, providing support and assurance to her along the way.

Our gastroenterologist reached out at the beginning of the year asking if she could submit our son and daughter’s names for honored heroes for the Crohn’s and Colitis Foundation. We asked our son, now 15, if it was okay and he immediately said yes. His response was that his story may be able to help other kids like him. Our daughter said she would do it if our son did.

When our son was first diagnosed, we were referred to the Crohn’s and Colitis Foundation to learn more about the disease. It was imperative to have that resource at our disposal in those first days and even today. Our kids are normal, everyday kids, doing normal 15-year-old boy and 10-year-old girl things. Our journey continues and more pivots will have to be made but we are honored to share our story and have our children serve as the Honored Heroes for Lincoln. Our doctor always talks about the advances that have been made in the treatment of Crohn’s disease. We know that the Crohn’s and Colitis Foundation helps make this possible and for this we are forever grateful.