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Rory Godfrey was diagnosed with Beckwith-Wiedemann syndrome – a condition that causes overgrowth in a child’s tongue, kidney, and liver – when he was three months old. Rory’s mother, Holly, had noticed that Rory was having trouble breathing and his tongue was continuously growing, which prompted her to take him to the doctor.
Although the doctors did diagnose him with the syndrome at the time, they didn’t proceed with any operation or correction plans.
Rory’s tongue continued to grow each week until it became large enough to touch his nose without any effort. His tongue constantly obstructed his breathing, always forced his mouth open with its large size, and folded backwards into his mouth, coming to rest on his throat, because it had no other place to lay.
It was only nine months later, after Rory’s parents heard him struggle to breathe over 100 times each night, that Rory returned to the doctor. They finally scheduled an operation to properly treat Rory’s condition. In the procedure, the doctors cut off a large W-shape from the tip of Rory’s tongue to reduce its size.
Now, two months post-op, a 14-month-old Rory can finally fit his entire tongue into his mouth, smile happily, breathe normally, and express his full vocal range. His most recent accomplishment is finally saying the full word “mama,” and his parents are hopeful that the worst of their fears surrounding their son’s health condition are behind them.
