Baker Roth had a condition known as Beckwith-Wiedemann syndrome or BWS. According to the Children's Hospital in Philadelphia, the genetic disorder is "generally characterized by overgrowth". And that's rare – usually just one in 11,000 births.
"The tongue is its biggest challenge right now," said his mother, Farrah Roth, 42, on Thursday to Fox News, adding that the boy had lived with a tracheostomy tube since he was only 6 weeks old. The tube helps Baker to breathe.
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. "We have never heard him cry or speak," Roth added.
Baker is the only concern. The disease also makes it hard for him to eat, said Roth. The toddler, who was delivered weeks ago by an emergency stop section, can only eat soft foods and is fed by a tube system known as Mickey's.
The BWS diagnosis from Baker came as a surprise. Although ultrasound images seemed to stick the boy's tongue out of his mouth, neither Roth nor her doctors saw this as a sign of the rare condition.
"I always thought it was sweet that his tongue was stuck out ultrasound, but realistically it was a macroglossia [enlarged tongue] that was caused by the ESPE," Roth told The Daily Mail. "Not many doctors are familiar with the syndrome, and we just found it adorable, I even wrote how cute it was."
In addition to life with macroglossia, Baker, who also underwent surgery shortly after birth, was treated for the treatment of omphalocele, a birth defect that causes a baby's bowel and sometimes other organs to "pass through the navel outside the abdomen according to the Centers for Disease Control and Prevention (CDC) – in June, hepatoblastoma, a childhood cancer, was also diagnosed. The cancerous tumor was found on the infant's liver, said Roth.
Baker's cancer diagnosis, along with his enlarged tongue and a previous case of omphalocele, are all related to ESPE, his mother said.
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After several rounds of chemotherapy, Bakers Crab returned in October. Roth later planned that Baker should undergo tongue reduction. However, the procedure has been postponed as Baker's hepatoblastoma may have returned, Roth said to Fox News.
"We have never heard him cry or speak."
Although treating her child's health problems has already been costly – Roth told The Daily Mail that she and her husband Sean allegedly have debts of $ 2 million – the mother said she looks forward to the day Baker can go through the reduction operation.
Dream of the day [of] when he hears his voice, his cry, [and when] he will be able to eat whatever he wants, "she said.