Dad's death shines light on rare Loeys-Dietz syndrome
/ CBS NEWS
Thirty-year-old Tyson Wallis died suddenly from complications from Loeys-Dietz syndrome, a rare heart disease that he didn't even know he had. His passing has helped lead to his daughters' early diagnosis, which means they'll get the proper and preventative care they'll need to lead healthy lives.
Loeys-Dietz syndrome is a connective tissue disease that affects the heart. It enlarges the aorta, tangles smaller blood vessels and typically leads to strokes and sudden death by an average age of 26. The disease stretches the aortic wall until it breaks. Only a few hundred people have been diagnosed with Loeys-Dietz syndrome, which is considered a connective tissue disease. It can show up in different ways, which means no two Loeys-Dietz patients will have the same medical characteristics.
Ever since Tyson and Kristin Wallis got married on July 24, 2004 they had tried to have children, according to CBS affiliate KHOU in Houston, Texas. They tried several fertility treatments, including in-vitro fertilization.
Finally, in 2010, the Wallis' got the news they wanted.
"My husband had brought a camera and a video camera and he was going to video it," Kristin explained about their first time seeing the girls on sonogram to KHOU. "And he dropped both of them when we heard the heartbeat. He just couldn
Olivia and Eleanor Wallis were born premature at 33 weeks.
"It was the best moment of my life," Kristin recalled to KHOU. "And he [Tyson] just kept whispering,
Ten months later, tragedy struck the family. On January 18, 2012, Tyson passed away from a rupture or dissection of an ascending aortic aneurysm at the age of 30. Kristin got the call that her husband had been rushed to the hospital as she pulled into her work parking lot.
People with Loeys-Dietz syndrome have a 50/50 chance of passing the disorder to their children. Two months after their dad's death, Olivia and Eleanor were diagnosed with the disease. According to Kristin's blog, both girls have enlarged aortic roots and their arteries are twisted. Eleanor has at least 2 holes in her heart. The girls will not be able to eat chocolate or caffeine, take decongestants or anything that would or could over-stimulate their heart and/or increase their blood pressure,and will have restricted activities.
But, because their father died from the disease, doctors knew to test the twins for Loeys-Dietz syndrome, which may help them lead full and healthy lives.
"The good news is that they will be monitored by a pediatric cardiologist who understands this syndrome and have begun taking a blood pressure medication called Losartan which has a side effect of combating the cell/gene receptors and stabilizing aortic growth," Kristin explained on her blog. "This is very promising, and should help the girls lead a fairly normal childhood."