My nine-year-old son was diagnosed with gastroparesis this year. He has struggled with symptoms since he was four. We have visited multiple doctors from different specialized fields over these four years trying to figure out why he continued to suffer from extreme stomachaches, constant nausea, malnutrition, losing weight, food intolerances, and constant fatigue. He has had numerous blood tests and different investigative tests over these years with doctors putting their hands up saying “I think he is fine.” Meanwhile the struggles continued; losing weight, constant nausea, stomachaches with tears; bloating, dark circles under his eyes, lethargy, blood sugar issues, and on and on.
Finally , after moving to another state, we went to another gastro doctor who said “I think this might be gastroparesis, let’s do a stomach emptying test.” Bingo. Test confirmed. While I hate that my little boy has this terrible disease, I am glad we finally have a diagnosis. I knew before the doctor called with the results that this was what he had. As any mom does, I did more research than the FBI on gastroparesis after the doctor told me it was a possibility. Everything matched when I read the symptoms online. Every website I looked at told me the symptoms, but every website also said there is no cure. How do we know so little about this disease and how are we not able to do something about it? Right now, we are trying to manage it with oral medications three times a day and diet modifications. He has good days and he has bad days. That is how it is with a chronic illness.
I hate this terrible disease and hate even more that my son is the one that has to suffer from it. I admire his tenacity- he goes through the days feeling horrible but presses on to try and be a normal kid. He plays baseball, basketball, loves all sports, and is a Cub Scout. But he also goes to bed every night with a bowl by his bed because of the nausea and stomachache. Simply put, doctors do not know about this disease because it is rare. We need awareness, research, and education for healthcare people to know these symptoms and properly diagnose this disease and to cure it. The numbers may be small for this disease when you compare it to some other medical conditions, but I guarantee there are others out there right now struggling without a proper diagnosis because of lack of awareness and research.
We need research to find a cure for this horrible chronic condition. I worry about how this will progress in my son as he gets older. I see others with this condition who are on feeding tubes, and those that literally starve to death. This scares me to no end. What does the future hold for my son? We need this legislation to put research into finding a cure for this disease. Please support this bill and when you do think of my nine-year old son simply trying to deal with this disease every day.