"When Nathan became ill and we understood it was a death sentence, I made a decision," Raes said. "If we only get one year to live, then it better be a good one."
Raes started a blog about their journey, which prompted an outpouring of support from neighbors, students and their parents.
At Nathan's last birthday party, one friend came with so many balloons that they filled the living room ceiling. When Halloween rolled around, the neighbors had the whole yard decorated. In December, there was Secret Santa.
"Every morning there was a gift for both kids at the front door," recalled Raes, referring to Nathan's twin sister, Isabelle.
Nathan died on March 19, 2018, 13 months after he was diagnosed. Now, a year later, his friends are still fighting Nathan's fight by raising donations for research to cure the rare disease.
Zachary Crystal, a Greene Middle School sixth-grader, and others of Nathan's friends and their families are holding a series of bake sales to fund the research.
Last Sunday, they braved the rain at three locations in Palo Alto, including in front of Whole Foods Market, Lytton Plaza and the Midtown CVS Pharmacy. At tables laden with cookies, brownies and other sweets, they raised $1,720.
This Saturday, May 25, they will host another bake sale near the Palo Alto Downtown farmers market from 10 a.m. to noon. They'll also join in the citywide garage sale on June 1 with a table on Kipling Street, across from Johnson Park.
Zachary, an erudite boy with a mop of dark hair and kind eyes, approached Raes about starting a fundraising website and the bake sales. He recalled the thrill of his first event four weeks ago, when the sale raised $360 plus a $500 donation from a relative.
He remembers his friend with pride: Nathan had a passion for collecting Legos, which he loved to build with. Nathan also enjoyed playing tag.
"He laughed a lot. (Before his illness) he was always energetic and always had a smile. He was such an enthusiastic person. He never complained — even with his cancer," Zachary said last week.
"I feel really devoted to the fundraiser," he said.
The fundraisers — and a website created by Raes and Zachary — have raised nearly $50,000 since the kickoff on the one-year anniversary of Nathan's death.
But that was just an initial goal.
Raes said they want to reach $200,000 to fund a specific project at Pittsburgh Medical Center Children's Hospital of Pittsburgh in Pennsylvania. There, researcher Dr. Miguel Reyes and his team focus exclusively on melanoma and congenital nevi — large moles in both the skin and the brain that can become cancers.
Reyes' research would try to understand the underlying molecular nature of neurocutaneous melanocytosis, a non-inherited condition also called central-nervous-system melanoma. He and his team also want to find drugs that would extend life and potentially find a cure. All of the money will go to fund the project and will not be used for overhead expenses, Raes said.
Bake sales alone won't bring in $200,000, but they serve other important purposes, said Marilyn Crystal, Zachary's mother.
They are a way for the students, parents and friends of Nathan to heal. Nathan was "a very special boy ... kind of an old soul. Very mature, deep, strong and so sweet. He loved the planet, people, animals, and plants and trees," she said.
And he had a motto:
Laugh a lot.
"It was so hard for all the family friends and school friends, and particularly after seeing his parents fight every fight to save him," she said.
Making a contribution and taking action is a way to create a positive change in the face of something that can't be reversed or is devastating, Raes said.
The bake sales not only raise money; they raise awareness about childhood brain cancers. About 3,000 children are diagnosed with pediatric brain cancer each year.
To honor Nathan, the family donated some of his cancerous tissue to a research bank run by Reyes. The family hopes it will contribute to finding a cure or treatment.
In an email, Raes reflected on the kindness of her community after last weekend's bake sales.
"I'm so grateful to all who came, purchased treats and those who donated outright! We met so many caring, compassionate and lovely people," she wrote. "The kids were awesome, and I think it was a healing experience for all."
Nathan's quality of life — and his family's — was greatly enhanced by the generosity and love of their community, she said.
"Being held by a village and supported in that way, it is a journey of humanity."
Donations for the research project can be made at givetochildrens.org/nathancarlsen.
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