Lora and her Ladybug

We welcome Lora’s mom as a guest blogger today to share her story.

Lora was born not breathing. She was born with a cleft palate, issues with her eye muscles as well as heart issues. She has significant dissection of her aorta, aortic root, and sinotubular junction. All of these issues are a part of a rare hereditary disease that she has called Loeys-Dietz Syndrome.

In her first year of life Lora has had 4 surgeries. She had 2 eye muscle surgeries, a cleft palate repair, and ear tubes. Lora has to have a yearly MRI and echocardiograms with sedation every 3 months to monitor her heart. We are expecting her to need heart surgery, but the question is when. GI issues are also common with this disease.

There are many issues that can come up for those with Loeys-Dietz. It is a disease that affects connective tissue and connective tissue runs all throughout the body. The most concerning is the possibility of aneurysms. Her father, who has this same disease, had heart surgery to repair the main aorta, aortic valve, and root replacement at the age of 20, however, he didn’t have any major health problems until he was 11.

Lora’s cake was provided by Sugar Angel Mary Jean Gunter in Burlington, Kentucky. Lora’s mom said, “We appreciate this program. We are thankful for our Sugar Angel Mary Jean Gunter and the beautiful lady bug cake that she made for Lora. The smash cake was such a wonderful surprise and Lora absolutely loved it.”