In Memory of Devin: Christine Suau Gives Hope to DIPG Families

Green superhero posters are hung up around town to announce the third annual Devin’s Dash, a 5K run, taking place this Sunday, September 22 at 8:30AM, at Jack’s Abby brewery in Framingham, MA. Devin’s Dash will benefit the #whynotdevin Foundation to End DIPG and is held in memory of Devin Suau, the sweet and spunky 6-year-old Framingham boy who lost his battle with cancer in 2017, just 8 months after his diagnosis.

October 20, 2019, Devin Suau Day in Framingham and Boston, will mark the two year anniversary of Devin’s passing. Devin’s death was mourned by not just the local community, but across the globe. #whynotdevin? was the simple hashtag question that gave everyone hope for him to be the first to win the battle against the rare but fatal childhood cancer, DIPG (Diffuse Intrinsic Pontine Glioma).

Christine Suau inspired her family and the world with her seemingly limitless strength and optimism. She connected with doctors around the globe, desperately searching for an answer other than the dire one that she was given with the initial diagnosis. She met with celebrities, athletes and even the Pope to get the word out about this rare cancer, which to date had not gotten much attention or research funding. She was an open book and her vulnerable honesty became the catalyst for people to listen to and share Devin’s story.

She created #whynotdevin, a nonprofit organization devoted to spreading awareness and fundraising for cancer research and family support services. She was willing to try anything that would give her son a chance to live. When Devin passed away, the agony and depth of the loss was enormous.

What has life been like for Christine Suau since that terrible day?

It would be understandable if she had shut down #whynotdevin. People would have supported her without question if she had quietly turned her life away from the pain of losing her child or tried to rebuild her life in a way that left the sadness of DIPG behind her. After Devin passed, she went through some personal health scares and a divorce. “How can I do this alone?” she recalls thinking, during the terrifying uncertainty of those first months without her son. Since that time, she has found answers to that question and strengthened her already powerful outlook on life.

In an interview with the Natick Patch, Christine talks about how she found her inspiration to stay strong. She talks about the profound impact of sending her three children to Camp Manitou, a bereavement camp in Maine. It’s a typical camp experience, hiking, swimming, archery, sports, and camp games but all of the kids who go have experienced loss of some kind. She saw firsthand the positive change this experience had on her children. She realized that one of the ways they were healing is by connecting with other kids who understood the deep pain of intimate loss.

Christine has continued fundraising for #whynotdevin. Her son asked her, “Why are we still helping?” She replied, “During the worst year of our lives, we were able to make memories and be surrounded by more love than a person could ever conceive of, we want other families to feel that same love and hope. It’s more important than ever that we keep going. It’s Devin’s legacy.”
In the process of building a community around the search for a cure for Devin, she has given a place to turn for other people who have been affected by this disease. Even after losing Devin, the DIPG community continues to fuel Christine’s desire to spread hope and love to people who experience the hardship and devastation that comes with a DIPG diagnosis.

Christine remembers the trauma of how it all started, “The doctors tell you in the first meeting that your child is going to die. I had to find a way to reach out to other families who were dealing with this same reality.”

Christine organized a Mom Retreat Weekend for moms of kids with DIPG. It started out last year as 10 moms but now has grown to 25. There are women coming from MA, CT, NY, NJ, WA and all the way from Ireland to participate in the retreat. Christine planned times for massage and restorative yoga and open time to talk and connect. The weekend will be kicked off with a Mitch Albom speaking engagement. Albom is well known for “Tuesdays with Morrie” and his recent book, Finding Chika, is a nonfiction book about the loss of his adopted daughter to DIPG.

Christine connected with the staff of Jack’s Abby, a local craft brewery who has donated proceeds from the sale of their beer to #whynotdevin. She is effusive in her praise of their help with her efforts, “They are such great people, and they care so much about this cause and our family." The brewery is hosting Devin’s Dash and several other fundraising events this year.

Christine has also found another way to include Devin's spirit in her work. When Christine lost her mother to breast cancer years ago, she felt that every dragonfly she saw was a visit or a sign from her mom that everything was OK. She knew her mom would feel happy knowing that her grandchildren would say, “Look mom, there’s Nana!” whenever they saw a dragonfly. For Devin, it is the bumblebee. Bees have shown up at unusual but perfect times and Christine and her sons find comfort in the thought that Devin is checking in on them. Meant to Bee is Christine's new business, born out of the memory of the way Devin embraced love and life and always stayed true to himself. She sells shirts and jewelry with symbolic bees, soap and lotion meant to soothe and heal. Proceeds from the sale of these items go to #whynotdevin.

As the powerful voice of her company, Meant to Bee, Christine can be booked as a speaker for large and small groups. She brings a message of hope, one that she also tells herself and her children.

“I will not let life be about losing. It’s about learning and loving and living the best life that we can. Until Devin’s last breath, I had hope.” Now, Christine is giving back that love and hope to families who are still fighting to save their loved ones.

Support Christine and her effort to bring light and love to DIPG families.

Devin’s Dash at Jack’s Abby
Check out Meant to Bee online and at the Metrowest Conference for Women this week
Join Christine’s facebook community #whynotdevin