Tonya and Cody were the first two people in the world known to have CFZ. Tonya was the first born child in her family, then almost 18 years later, Cody came along. For the next 37 years, Tonya and Cody blazed a trail for others by the example of the lives they lived. Tonya passed away in 1998 after a short battle with Pulmonary Hypertension. Because Tonya was the first known person to have CFZ she was able to set an example not only to Cody but everyone who came in contact with her.
Live to Inspire Foundation‘s mission is to provide awareness, educate, and fund research for rare medical conditions, focusing on the Carey Fineman Ziter syndrome (CFZ). CFZ is a rare syndrome that affects less than 15 people in the entire world. Until 2015 there where only 2 confirmed cases in the world. With very limited resources, an additional 9 have been confirmed with more on the way.
Through our efforts on the website, CFZsyndrome.org, we have been able to connect with patients, parents, and medical professionals from all over the world. This site has provided a central place for accurate information and helpful resources for those looking for hope, understanding, guidance, and to connect with qualified medical professionals.