Surgery in Houston gives Georgia teen with a rare disorder ‘hope for something better.’
Looking back, 18-year-old Ayden Fireck can now recognize the signs of his diagnosis of Loeys-Dietz syndrome, a disorder that affects connective tissues, including ligaments, bones, blood vessels and muscles.
He has translucent skin and cleft palate, both common symptoms of the rare condition.
But Ayden had never put two and two together. After all, he had no other signs, no causes of concern.
In fact, he wasn’t even aware of the disorder until about five years ago, at age 13, when a genetic test revealed the mutation. His mother, Amy, and brother, Kamdyn, then 9, were also diagnosed, as was Amy’s late father Arthur Ross.
Twice, his health brought him to Houston, for open heart surgeries. “Nobody else would touch him, because he was at such high risk,” Amy said.
Amy contacted the John Ritter Foundation to learn more. “I was determined to protect my kids,” Amy said.
After her 2015 emergency surgery, Amy Fireck set out to find out as much as she could about aortic dissection — as well as Loeys-Dietz once she was diagnosed.
She’d met Dr. Anthony Estrera, professor and chair of cardiothoracic and vascular surgery at McGovern Medical School. Years later, she came across his name in an article in the John Ritter Foundation newsletter article after he performed a pioneering preventive surgery to repair the weakened artery of an Arizona teen who lost both of her brothers and father to the same genetic disorder.
“It gave us hope,” she said of the work by Estrera, who is professor and chair of cardiothoracic and vascular surgery at UTHealth Houston Heart & Vascular.
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Published via the Houston Chronicle