On June 30, 2015, the school year had just recently ended at Lakeland Hills Elementary in Auburn. All around the affluent, tight-knit Lakeland Hills community – which sits atop a plateau between Auburn and Lake Tapps – kids could be seen celebrating their newly-found freedom on skate boards, bicycles, and scooters. However, the scene that day was much less idyllic for the Huffman family.
“She was a completely normal, healthy kid until June 29th,” Brandon Huffman said of his then 6-year-old daughter, Avery.
Avery was diagnosed with diffuse intrinsic pontine glioma or DIPG. This insidious form of brain cancer strikes during the heart of childhood, affecting the pons portion of the brain stem. Symptoms often come on suddenly and include double vision, difficulty chewing/swallowing, as well as an inability to close one’s eyelids. Due to the tumor’s characteristic rapid growth, inoperability, and resistance to chemotherapy treatments, the prognosis is always grim; Avery was given a 9 to 12 month time frame.
Immediately, the small community rallied around the Huffmans, providing meals and support while sporting shirts that proclaimed “Avery Strong” and “brAvery”. Motorists driving past Lakeland Hills Elementary School couldn’t miss the Hearts for Avery banner display.
“I grew up in a beach community in southern California and I always thought community was like that,” Huffman said. “Then Avery got sick and I knew within five days after her diagnosis – the way this community rallied – this is community.”
Unfortunately, seven months after her diagnosis, Avery lost her fight with DIPG on Feb 16, 2016 but that didn’t stop the love and support of the community. Some of Avery’s classmates set up a lemonade stand and donated all their funds to Avery’s family.
“They raised like $250,” Huffman said. “These girls, 7 years old, handed over an envelope full of $1 bills and coins.”
As Avery’s siblings – Alexandra, Cade, and Addison – and their classmates returned to Lakeland Hills Elementary this fall to start another year, Huffman knows his daughter is remembered.
“On the first day of school kids were wearing Avery Strong shirts,” Huffman said. “Avery is so fresh in all those students’ minds and the families’ minds.”
Following Avery’s passing, Huffman and his wife Amanda did their best to return to life as usual. Seventeen days later, Huffman returned to work at Scout, a national high school athletics recruiting firm. Through the company’s blog, Huffman sent heartfelt thanks for support during his absence while simultaneously announcing that he and his wife would continue their daughter’s fight through the creation of the Avery Huffman Fight DIPG Foundation.
“So while I return to work and focus on that, while continuing to focus on my family, I too will focus on the fight,” he wrote on his first day back at work. “A fight for a disease that 36 weeks ago, I didn’t even know existed. A fight that children unfairly have to fight. A death sentence they have no control over stopping. I will use my platform, my contacts, and social media following to raise awareness for the fight against DIPG, so no parent ever has to hear the words ‘nothing can be done’ again with this disease.”
In order to start fund raising for the foundation, the Huffman’s held booster campaigns throughout the Lakeland Hills community, selling shirts, car decals, school supplies, and other items emblazoned with “Avery Strong” to raise awareness and start the conversation about DIPG.
This past week the foundation hosted their first large event, a gala which brought in more than $75,000 and they aren’t stopping there. There are plans for a Seattle Marathon team as well as a Broadway for BrAvery event at the Auburn Riverside Theater in early 2017.
Fundraising and memorials aside, Huffman said he just wants people to know how awesome his daughter was.
“Avery was a stud; she was an absolute warrior,” he said. “That is the biggest thing to me. It’s not the foundation or the Lakeland Hills community that responded, it was Avery. And it still is Avery. I think that, more than anything is what is inspiring us to continue to fight in her name forever.”