My daughter Maureen (Mo) has Loeys-Dietz Syndrome, a connective tissue disease similar to Marfan syndrome. Loeys-Dietz syndrome is complicated. It affects the connective tissue that runs throughout the body—organs, muscles, and blood vessels. You name it. It’s present. When the tissue is weakened and defective, it is bound to wear down, be stretched to its limits and sometimes break. A major issue for Loeys-Dietz patients is they develop aneurysms throughout the body along with having many issues with the joints and other soft tissues.
Mo was born in 1995. Loeys-Dietz syndrome was not discovered until 2005. She has made many trips to Children’s Hospital of Wisconsin since she was born, visiting a number of clinics including orthopedics, ENT and neurology. Her first visit to …Click here to continue reading