The story of Christie
My daughter was diagnosed with an extremely rare genetic syndrome called Arterial Tortuosity Syndrome in 2009. There are less than 100 cases every documented in medical literature. There are only 7 known cases in the United States. ATS affects your entire body. All the arteries are twisted and narrowed. Ats involves hypertension, hyermobility to name a few. Morbidity is high due to very literature research out there regarding the syndrome. Currently, my daughter is 4 years old. She has had hiatal hernia surgery, a G-tube placement, 8 cardiac catherizations, and 6 stents placed. She recently underwent a catherization where no progress could be made. There is an ATS facebook page to help find others who might have ATS and also have a place where parents of ATS children can connect and share stories.