Toddler’s Rare Disease Caused Tongue To Double In Size As He Also Battles Cancer

He cannot eat or speak because of the condition, but surgery may help.

surgery
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He cannot eat or speak because of the condition, but surgery may help.

Baker Roth is a fighter. This 16-month-old little boy has endured so much pain and suffering in his short life. He’s lived almost every day of his 16 months in the hospital battling to stay alive.

He was born with a rare condition called Beckwith-Wiedemann Syndrome, explained People, which causes parts of his body to grow at faster rates than the rest of his body. That sadly causes cancerous and noncancerous tumors to quickly form all throughout his body.

Because of this rare disease, Baker developed a rare childhood liver cancer called hepatoblastoma. At just 10-months-old, he underwent surgery to remove the cancerous tumor in his liver and started chemotherapy. After three tough months of treatment, Baker found himself joyfully in remission.

“Thank you all so much for the continued prayers, love and support,” his mom Farrah wrote on a GoFundMe page the family had created to help curb Baker’s huge medical bills. “We are going to enjoy a week of freedom, and then check back in for our maintenance chemo. We will have two rounds [of chemo] then [a] scan and then we will be ringing that cancer free bell!!!”

In December, Baker and his family were thrilled to usher in the holidays with a baby in remission. They couldn’t wait to enjoy the festivities. But their joy and happiness were squashed after the family was informed just two days before Christmas that Baker’s tumor markers were back up. That could be an indication that the cancer has returned.

But the family intended to enjoy the holidays and undergo testing afterward.

“Unfortunately, we got that phone call you don’t want to get after getting our labs done last week,” she shared on the website. “We are believing that it could possibly be liver regeneration causing Baker’s tumor marker to go up more than it should … we are going to celebrate the holidays like that call never came.”

Not only does Baker have to battle cancer, but because of the Beckwith-Wiedemann Syndrome, his tongue has doubled in size and prohibits the little guy from speaking clearly and even from eating solid food. He has a trach tube inserted in his throat to help him breathe, but will be undergoing tongue reduction surgery soon that hopefully will help.

The family has been blessed by the generosity of others, not just from prayer warriors who vow to remember Baker in their thoughts and supplications, but also from the donations that have flowed in. Their GoFundMe page has surpassed the small goal that was established, but kindhearted people continue to step up and support this brave little boy.