A Father's Death Due to Rare Genetic Disorder May be Lifesaving for His Daughters
A father’s unfortunate death may be potentially lifesaving for his twin girls.
Tyson Wallis died from a ruptured aorta, which was caused by an extremely rare, genetic disease called Loeys-Dietz Syndrome. Wallis was found collapsed in his Texas home in January. He was not diagnosed for the condition, which took his life at the age of 30.
According to Johns Hopkins Medicine, Loeys-Dietz Syndrome is a connective tissue disorder that was identified in 2005. The disorder causes sufferers to be more suspectible to aneurysms and causes some tissue to tear more easily. Usually this occurs around the aortic root, much like how Wallis died. People diagnosed with the Loeys-Dietz Syndrome have an average life expectancy of just 26 years.
An autopsy revealed his condition which has a 50 percent chance of being passed down to his twins. Widow, Kristin Wallis, is taking no chances with her daughters. After getting her twins tested and results determined her twins are positive for Loeys-Dietz, she is doing everything possible to ensure her children have a fighting chance.
According to Dr. Shannon Rivenes, a pediatric cardiologist at the Texas Children’s Hospital, one can have this disease and have no clue at all. There are people in their 60s and 70s have had a good quality life, while the hospital has also treated younger individuals with a more servere form of the disease.
Warning signs to be aware of are widely spaced eyes, a cleft palate and a receding chin.
The Willis twins are now on medication that works to slow the growth of their aorta. Open-heart surgery could be a potential possibility in the future for the girls as well. Dr. Riveness hopes to slow the progression of symptoms related to Loeys-Dietz Syndrome. There are new guidelines being put fourth, along with new medication that may allow the twins to lead a pretty normal life.
Although Mrs. Wallis is grieving her husband’s untimely death, she states he may have saved their daughter’s lives. Wallis believes if it wasn’t for this misfortune they may have never known about it.