When Farrah Roth was 27 weeks pregnant, she and the doctors thought her unborn son was just being cute by 'sticking out his tongue' on the ultrasound scans.
Farrah gave birth to baby Baker via emergency C-section eight weeks early. The very first thing the doctor did was comment on the boy's unusually large tongue — double the normal size.
As it turned out, Baker was born with Beckwith-Wiedemann syndrome (BWS), a rare overgrowth disorder that affects one in 14,000 babies.
Baker was also born with his intestines and kidney outside his body, and later a cancerous tumor was found on his liver. After three surgeries and five months of chemotherapy, Baker went into remission.
There are still dangerous issues posed by his oversized tongue, which obstructs his airways, causing him to hold his breath. The incredibly brave baby was fitted with a tracheostomy tube at birth to help him breathe.
The Roth family fears they've racked up over $2 million in medical bills.
They hope Baker's next surgery will reduce the size of his tongue. He needs the operation so he will be able to make sounds, communicate better, and eat more types of foods.
If you would like to help Baker in any way, please visit his official GoFundMe page.
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Watch the video to learn more about Beckwith-Wiedemann syndrome.