Photo: Sloane Swanton
Chordoma in children and young adults can be aggressive, and better treatments are urgently needed for this unique population. At the Chordoma Foundation, we’re advancing pediatric chordoma research and providing free, personalized guidance to help families access expert care and treatment for children diagnosed with this disease — all made possible by the generosity and fundraising efforts of families affected by chordoma.
This Childhood Cancer Awareness Month, we’re proud to highlight just a few of these families. Some of their children are thriving, while other experiences ended in heartbreaking loss. Sharing their stories is our way of honoring each young person, and showing how their families are changing what’s possible for others.
Noah Amador
Noah’s MarioKart Races
Noah Amador of Perry, Florida, loved Super Mario, kindergarten, pizza, and making people laugh. Behind his cheerful smile and sense of humor, few would have known how sick he was. Diagnosed with chordoma at just 20 months old, Noah fought the disease with remarkable bravery but passed away just one month shy of his kindergarten graduation. Those who knew him will always remember his “fighting spirit and a capacity for joy that few find in a lifetime,” his family says.
In his memory, Noah’s family hosts an annual event to benefit pediatric chordoma research. True to Noah’s playful spirit, this year’s event will feature MarioKart racing, where participants design and decorate their own race cars and compete for prizes. “Thank you for helping us ensure that in the future, children diagnosed with chordoma will no longer have to face what Noah did,” his family says.
Mateo’s Recovery
Mateo was diagnosed with chordoma at 2 years old, but following a successful surgery at NYU Langone at that time, he remains cancer-free today. Now 9 years old, Mateo is thriving. He plays sports, runs around with his siblings, and enjoys a normal, active childhood.
His parents, Chris Cracchiolo and Carol Wang, continue to give generously to the Chordoma Foundation to help make sure that other families facing chordoma have the best chance at positive outcomes. "We feel incredibly fortunate," Chris says, "and that motivates us to put more goodwill into the world."
Drew Barker-Wright and his parents, Jon and Melanie
The Drew Barker-Wright Charity
Drew Barker-Wright of Wales, UK, had a vivid imagination, frequently asking to hear stories of grand adventures and magical journeys. Diagnosed with chordoma at age 3, Drew endured intensive chemotherapy and surgery, but sadly passed away three months later, in 2017.
To honor Drew, his parents Melanie and Jon founded the Drew Barker-Wright Charity the following year to raise funds for pediatric chordoma research such as through their annual New Year’s Eve 5K Fun Run and sales of Drew, Moo and Bunny, Too, a beautifully illustrated children’s book they published in his memory.
“We’re inspired by Drew’s gentle spirit, courage, and the belief that every child with chordoma deserves a brighter future. We are deeply committed to funding targeted projects that drive progress in pediatric research,” Melanie says. “Together we can improve outcomes for the youngest members of the chordoma community.”
Cameron Riccomini
Cameron’s Pub Crawl
Cameron Riccomini of Sayville, New York, loved sports, video games, playing the cello, and performing in his school talent show. Diagnosed with chordoma at age 5, Cameron faced the disease with incredible courage until he passed away in November 2012 at age 10.
“Cameron was a spitfire,” said his mom, Colleen. “For a young kid, he’d been through so much, but he took it all in stride.”
To support pediatric chordoma research, his family launched the annual Crawl for the Chordoma Foundation in 2011. On October 4, 2025 the Riccomini family will host their 13th annual pub crawl. Donations from local businesses have poured in, and there will be some spectacular raffle prizes: gift cards, themed baskets, museum and theater tickets, a professional photo shoot, and more.
Kaitlin Slepian
Kaitlin Pays it Forward
In high school, Kaitlin Slepian of Arizona wanted to attend prom. But a chordoma diagnosis and intense treatment schedule at Massachusetts General Hospital made that quintessential teen milestone seem out of reach. “I remember crying in the doctor’s office, experiencing so much sadness at the thought of missing out on the dance,” Kaitlin says. After the hospital's child life specialist helped Kaitlin learn how to advocate for herself, she worked with her doctors to make her wish come true. She not only attended prom her senior year but was crowned queen.
Today, Kaitlin is 8 years cancer-free and works as a child life specialist at Boston Children’s Hospital; she also helps other teens and young adults with chordoma find connection and support. Kaitlin’s parents, Mark and Laurie, make a gift to the Chordoma Foundation each year, and Kaitlin herself is a repeat fundraiser. “The search for a cure is incredibly meaningful to all of us impacted by chordoma, and we know the progress already made would not be possible without the Foundation and all those who help to champion their mission,” she says.
Sloane Swanton's Research Run
Sloane’s 5K Research Run
Sloane Swanton of Columbus, Ohio, loved playing with her sisters, snuggling with her parents, and sharing her infectious smile with everyone she met. Mischievous and playful, she often climbed the stairs when no one was looking and giggled as her family came to find her. She especially loved bath time, where she would splash, laugh, and slide on her belly.
Diagnosed with chordoma as an infant, she endured multiple surgeries and chemotherapy before passing away in September 2021 at just 18 months old. In her memory, the Swanton family hosts the annual Sloane Swanton 5K Research Run/Walk in Columbus, now in its 4th year. “Though Sloane was not able to benefit from the progress being made in pediatric chordoma research, I am glad we can raise funds and awareness for families who will face this disease in the future,” says her mom, Sarah.
Victoria Messina (R)
V is for Victory
Victoria Messina was 14 years old when she was diagnosed with chordoma. After courageously undertaking difficult treatments far from home, she’s now doing well, and her family is determined to help other patients get the same chance. So the Messinas launched the V is for Victory Fund to raise money for better treatments and expanded access to clinical trials — and have already raised nearly $170,000!
“We were fortunate to access the best care for Victoria,” says Paige Messina, Victoria’s mom. “We want every patient to have that opportunity.”
How you can help
We’re deeply grateful for the generosity of those who give and fundraise. Here are a few ways you can join them in advancing our shared mission:
Make a gift to our pediatric chordoma initiative or general fund. Every gift supports those facing this disease and accelerates our search for better treatments.
Make a Perseverance Pledge, a recurring monthly gift that funds research and honors late pediatric chordoma patient Justin Straus, whose courage and determination continue to inspire progress for every patient.
Start a fundraiser. Rally your network to help improve outcomes for chordoma patients. We’ll provide tools and support to make it easy and rewarding.
Join Team Chordoma on October 5, 2025. Walk, run, or race with us to raise awareness and funds (virtual option available!).
Together, we can give every person facing chordoma the best possible chance at a long, healthy life.