For the family of 6-year-old Devin Suau, every day is a race against the clock.
Devin was given between eight months and two years to live after being diagnosed with an inoperable brain tumor for which there is no known cure: diffuse intrinsic pontine giloma (DIPG).
His family is hoping the hashtag #WhyNotDevin will raise awareness in time to find a cure.
Three weeks ago, Devin got a concussion while snowboarding. While getting evaluated for treatment, doctors discovered the tumor on his brain stem.
“Life changing. Three weeks ago we were a normal family doing normal activities,” Devin's father James Suau said. “We got some of the results today that he has high grade, which means it’s a faster growing.”
Devin has three older brothers, and his parents are doing the best to keep things normal for the whole family while Devin undergoes radiation and doctors work to find clinical trials that might give him more time.
“Being told that your 6 year old has a maximum of two years of life is beyond anything you can comprehend,” his mother Christine Suau said.
Since the family started using #WhyNotDevin, the Mass. State Police, Harvard hockey team, members of the military and families all over their country have offered support. The hope is that an organization will see the hashtag and offer funding for research and treatment.
“These kids are not given a very long time once they’re diagnosed. If we don’t do something for Devin, or any other child in this situation, its heartbreaking,” James said.
The family has set up a Facebook page where they post updates on Devin’s fight and there’s also a GoFundMe page to help cover the family’s medical costs.