After I got the phone call that my son has the higher risk genes, a call I’ve in fact made to parents countless times, I told my husband the news. He just said “Sign him up, why wouldn’t we?” I also wanted to have my son participate for many reasons. Some of my reasons are more selfish than others. I really want to know those antibody results and I’m a little anxious each time I receive results. I like that we are a tiny piece of an international research study, that the information we give about our son may someday be part of finding the cause or prevention for type 1 diabetes. I know how important every single TEDDY child is and I’m glad that if my child had to have the high risk genes at least he can be monitored, followed and help this important research study.
While many of the children born to staff members were screened for the high risk genes since TEDDY began in 2004, there had not been a child of a TEDDY staff member eligible for the follow-up at our site until the results came in for my son and then C’sTEDDYMommy received results at the same time. Privacy was a concern at the very beginning but now I don’t mind sharing that we participate in the study. We are proud to be a part of the TEDDY study and I hope someday in the future my son is proud too.
Why do you participate in TEDDY? I’d love to have other parents write why they participate or why TEDDY is important to their families. If you don’t want to write but are still interested in sharing your experience we can speak on the phone and I’ll write your story in an interview format. Please email email@example.com or contact your TEDDY site by email or phone.