FRAMINGHAM (CBS) – Devin Suau has more spunk and courage than many kids his age. “I have to fight for myself that I will be OK!” Devin said.
The six-year-old is battling a very rare form of pediatric cancer called Diffuse Intrinsic Pontine Glioma or (DIPG). “A rare brain tumor that sits on the top of the spine,” his father James Suau said.
Or as Devin tells it, he has a very bad rock in his head that needs to go. “We need to blow up and so I can have a good life,” Devin said.
He was diagnosed just three weeks ago after falling off his snowboard. Even now he has trouble walking. “It’s not operable and there is no cure and they gave us very little hope when we met with him,” his mother Christine Suau said.
Doctors says approximately 300 children in the U.S. are diagnosed with DIPG each year. Most of them are between the ages of five and nine years old. “We were given a timeline eight months to two years,” Suau said.
The family has created a #WhyNotDevin campaign that’s generating a lot of celebrity buzz across the country from the likes of Tom Brady, the Boston Red Sox and even Kim Kardashian sent out her support in a tweet.
“Why not Devin, we need to spread awareness and someone needs to be first and we hope to God it will be Devin,” Suau said.
The family says time is not on their side. And Devin’s fight for a cure will take a miracle, but they are not giving up hope and they want to spread awareness of this horrific disease. “My hope is that one of these pharmaceutical companies will say we are going to find a cure,” Suau said.
Surrounded by his three older brothers Devin knows he’s not in this fight alone and every day is a gift.