His name is Baker Roth, he is a child of just one year and was born with Beckwith-Wiedemann syndrome (BWS): a rare genetic disease, which led his tongue to never stop growing.
So the doctors, to make him smile again and save his life, removed half of his tongue with a surgical operation that the child urgently needed, to prevent his jaw from deforming and allowing him to eat and breathe.
It happened in Oklahoma, in the United States. The parents of the baby at first thought that their baby was just enjoying taking his tongue out at them. “I always thought he was playing and grinning… Not many doctors are familiar with this type of syndrome. Now it scares me to see his photos from before, because I never thought how big his tongue was and the difficulties he would have had to face.”
Born eight weeks premature with an emergency cesarean, baby Baker was also diagnosed with a rare stomach cancer that affects two in a million people. After surgical intervention and five months of chemo, he was put into remission last October.
A small hero, who has already faced two very difficult challenges: “I was never afraid he would die. It will be exciting to explain to him where his scars come from when he gets older”. The costs of medical expenses, however, are very high: over 2 million Dollars estimated for the future. That is why the Baker family has started a fundraiser to try to cover the costs necessary to allow Baker to have a normal life.