October 29, 2010 – October 20, 2017
Diagnosed: January 25, 2016
Devin Suau was six-years-old and from Framingham, Massachusetts. After hitting his head while snowboarding and seeing a doctor about a possible concussion, Devin was sent to Boston Children’s Hospital where he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on January 25th, 2016. Like all DIPG families, the Suau’s were completely blindsided and struggled to understand how such a devastating disease could even exist, let alone one so few people had heard of and for which there was no funding for research.
Devin was the youngest of 4 boys, he loved to play soccer, lacrosse and snowboard and looked up to his brothers a great deal. His favorite color was green and he loved the Green Lantern because as Devin said, “He can do anything.” Devin might have been the youngest in his family but he had the biggest personality, making anyone who knew him laugh and fall in love. He always had a joke ready and his smile lit up a room.
After his diagnosis, Devin‘s parents, Christine and James, decided to go public in the hopes of raising awareness and finding a treatment that could help save Devin‘s life. They started the #whynotdevin media campaign, which asks: Someone has to beat DIPG so why not Devin?
In the Suau family’s darkest moment, the people of Framingham, Massachusetts and the world rallied to support Devin and his fight! Devin‘s Army currently has over 11,000 members! Celebrities, professional athletes, politicians, local police and fire departments, military units, youth and high school sports teams, school boards and other school children and their families began posting photos of themselves holding signs saying #whynotdevin, and the Suau family has been inundated with letters and cards of support as well as care packages, gifts for Devin and his brothers as well as a meal train that is sensitive to food allergies. Devin‘s story has gone viral with several reports from local news affiliates, featured stories on CNN and ESPN’s SportsCenter. Devin became good friends with the Mayor of Boston, Marty Walsh and helped to convince Massachusetts Governor Charlie Baker to declare May 17 Massachusetts DIPG Awareness Day.
With the kindness and generosity of friends, loved ones and even strangers, the Suau’s have created incredible memories since January. They traveled to Turks and Caicos with the Make-A-Wish Foundation, received a blessing from the Pope in Rome and spent time in Ireland and Cape Cod. The family rode on Tom Brady’s duck boat during the Superbowl Parade and got to be on set for the filming of Daddy’s Home 2 (Will Ferrell can still be spotted wearing a #whynotdevin wristband!). Devin was named the Framingham Police Chief for the Day, honorary Postmaster General of Framingham and Boston Police Commissioner for a Day where he led the annual St. Patrick’s Day Parade. The City of Boston even lit up the city in green in support of Devin and DIPG Awareness on May 17! These incredible experiences and hundreds of every day gifts and acts of kindness helped the Suau’s face this monster.
Devin received CED treatment in London and faced this challenge with strength, grit and a smiling face.
You can join Devin‘s fight by following his journey on Twitter (@WhyNotDevinDIPG) and Facebook.
