Our IBD journey began over five years ago with our oldest daughter. It presented itself more like a thief in the night rather than a bold, coming out. For three years prior to diagnosis, there was a sense that something was not right, but the clues left were random and independent of each other. Add in a misdiagnosis and it would take someone highly skilled to assemble the clues and uncover the mystery.

For several years, our daughter experienced subtle symptoms, ER visits, a misdiagnosis, and lost 30 lbs. Eventually, our journey would take us to Boston and MassGeneral Hospital for Children (MGHfC), where we met our pediatric gastroenterologist who was able to assemble the clues and present us with a diagnosis: Crohn’s disease.

Finally, we knew what we were up against. And I felt a sense of sadness and fear for our daughter. Sadness that there was no cure for this disease and fear that the treatment decisions made today could negatively affect her future. About a year later our son was also diagnosed with Crohn’s disease. The symptoms were equally as subtle but because we had been through this before with our GI team, we were able to make a quicker diagnosis.

Each member of the GI Team at MGHfC has been caring partner in the care of our two children. We felt our relationship with the team, and especially our pediatric GI, extending beyond the basic doctor-patient relationship and this has led to our involvement with our local IBD Center and ImproveCareNow (ICN). This has led to meeting the most inspiring people.

There is a sense of support that comes from being around people with similar challenges. It was the support I never realized I needed. Being able to pay forward the care and kindness we’ve received and to partner with both our local IBD Center and ICN to help improve care for others, has been an incredible privilege. Now close to six years into this journey, I see how blessed we are. I know because of the exceptional care our children have received, this disease will not define them or limit the possibility of achieving successful, happy lives.


Stay in the LOOP - sign up for updates and never miss a post! 

Read more posts by Parents on LOOP >>

Built by Veracity Media on NationBuilder