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Our kids inspire us to fight to defeat DIPG.

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June 17, 2006 – July 3, 2011

Diagnosed: November 29, 2010

Julian Boivin fought bravely for seven months before gaining his angel wings on July 3, 2011. Julian was a wonderful big brother to Mirabelle. His baby brother, Bastian, was born after his passing, reminding the Boivins of Julian in looks and personality.

 

Julian’s Story

Julian wasn’t the first 4-year-old who imagined himself a brave knight or a superhero, but he was one of the best at it. Embodying his characters was a joy to watch. He wore underpants over his pajamas “because that’s how Superman and Batman wore theirs.”

Being the firstborn child to parents Nettie and Brad, Julian’s father took great pride and joy in teaching him about many of his childhood favorites: Star Wars, Marvel superheroes, comic books, action figures, castles, and fantastical storytelling and imaginary play. Julian handily transformed into a noble knight by fashioning a quiver out of a belt and dinner napkins; his arrows were wooden mixing spoons and his bow a plastic coat hanger. It was his love of battles – classic good guy vs. bad guy stuff – that saved us in an unimaginable moment that first week in the hospital. How do you possibly explain to a 4-year-old the terrible news the doctors had just broken to us?


As Julian woke in ICU from his first surgery, I held his hand, and it came to me. “Buddy! You’re not going to believe this! We just found out you’re a real-life superhero! The doctors said they found something inside your head that makes you super special, like a young Jedi. It makes you have real-life super powers!”

His beautiful smile came through, and our mission began.

Nearly a Decade Later

Ask any parent of a child with a brain tumor, and we’ll say things have never happened fast enough. But realistically, these breakthroughs take a tremendous amount of time and money. The number of researchers and frontiers being explored has changed exponentially since Julian’s treatment in 2011. The excitement we see and hear from the researchers is contagious. Of course, I wish there was more we could’ve done for our son, but we’ve stayed in this fight because there are so many brave, beautiful children like him that deserve a fighting chance.

– Nettie Boivin, Julian’s mom

How Team Julian Became a ChadTough DIPG Family Partner

Diffuse Intrinsic Pontine Glioma (DIPG) is considered “rare” by scientific standards, but the families who have been impacted by the disease find that hard to believe. Julian Boivin was diagnosed with DIPG in 2010 at the age of four. He fought for seven months before gaining his angel wings on July 3, 2011 – 16 days after his fifth birthday. Three years later, Chad Carr would be diagnosed with DIPG. The families live less than an hour apart and know many of the same people.

“This disease sure doesn’t feel rare,” said Tammi Carr, co-founder of The ChadTough Foundation. “We know so many people close to us — both in proximity and through relationships — who have been devastated by DIPG. It feels way too common.” Brad and Nettie Boivin founded Courage for Cures in 2011 as a way to honor Julian and raise money for DIPG research. The ChadTough Foundation was founded four years later, and ever since, the two organizations have worked side by side. “We’re all working toward the same goal, we’re only 45 minutes away from each other, and we’re funding many of the same projects, especially at Michigan Medicine,” said Nettie.

Seeing the overlapping efforts, the Boivin family decided to dissolve Courage for Cures and become a ChadTough DIPG Family Partner.

“The Carr family and The ChadTough Foundation have been so generous and thoughtful in honoring Julian within their events,” said Nettie, “that it just made sense to officially join forces and fold our efforts into their larger organization and broader reach.” With the two organizations coming together, the families can strategically complement one another instead of duplicating efforts.

The Boivins are also bringing their incredible community of supporters in and around Detroit (and beyond) to learn more about The ChadTough Foundation and its efforts. “We started out in 2011 as Team Julian, and we will continue on as Team Julian,” said Nettie. “Courage for Cures will cease to exist in name but not in mission. The changes in operations are administrative only.”

More Heartbreak

Unfortunately, the Boivin’s heartbreak did not end with the loss of Julian. Tragedy struck the Boivin family once again when Julian’s father, Brad Boivin, lost his battle with cancer on October 10, 2019.

Brad was strong, dependable, handsome, kind, and committed to his family. He was smart, an avid reader, he always had context about history and politics. He loved a good game of chess – especially with his good friend, Marquez. He took up running, played soccer, hockey, golf, tackled a triathlon, and several 10Ks. He was always wanting to try new things – guitar, piano, he even wrote a book. Brad was good at so many things, but where he truly shined was being a family guy. He was the most adoring father to his Julesy, his Sweet Muffin, and his Bastiyonce. Martin Luther King Jr. said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”

According to Nettie, “This is where Brad raised the bar. When Julian first got sick, Brad and I sat in his hospital room one night, both on our computers researching how we might save our son. Brad looked up with tears in his eyes and asked, “Please promise me, no matter what happens, you and I will end up together.” We vowed once again to be partners in navigating even the roughest terrain… together. And so, as partners, we ushered our first born into this world, and then saw to the heart crushing task of ushering him out.

We grieved together, and we built Julian’s legacy together, and we made it through the other side… together. Fast forward 8 years, cancer came back for us. I will not give this disease any more time in this speech other than to say it’s horrid and it’s brutal. What is worth saying is that Brad was absolute in his commitment and determination to earn more time with his family. With every single treatment, surgery, or set-back, he kept saying, “Whatever it takes… we’ll figure it out.”

None of us are quite sure how to live this life without him, or what we’re supposed to do now that he’s gone. But in the words of my forever perfect partner, I promise you, My Love, together…We will figure it out.

Although The Boivin Family has experienced more heartbreak than any family ever should, their original mission to help give kids a fighting chance against DIPG and pediatric brain cancer remains. In honor of Julian, and the mission Brad helped build, The Boivin Family is proud to continue the fight in partnership with ChadTough.    

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.