Mateo’s Story: Strong family, bright future
In 2018, Carol Wang and her husband Chris Cracchiolo were enjoying the packed but routine days of typical working parents in New York. With busy careers and two active young sons, life was fun and full — and felt normal.
But around the time their younger son, Mateo, was about to turn two, Carol noticed something off. Mateo started favoring one arm, struggling to use the other normally. Initially dismissed as torticollis, a common stiff neck condition in toddlers, Mateo’s symptoms persisted and worsened, prompting Carol and Chris to seek further evaluation. After seeing a physical therapist who suggested a neurological evaluation, they consulted their pediatrician, who advised them to head directly to the emergency room.
At the ER, Mateo underwent an MRI, and Carol and Chris received news no parent anticipates: Mateo was diagnosed with a skull-base conventional chordoma — a very rare tumor, especially for a kid. "We were in full-on panic mode," Chris recalls, "We’re thinking, ‘how is this possible?’"
Fortunately, Mateo’s local hospital was NYU Langone, one of the leading chordoma treatment centers in the world. Dr. Chandra Sen and Dr. David Harter, renowned surgeons with experience treating chordoma, were available to operate — an extraordinary stroke of good luck, given that many chordoma patients must travel significant distances for such expert care.
Mateo’s surgery was extensive, lasting more than twelve hours. Drs. Sen and Harter carefully removed the tumor and stabilized his spine. The uncertainty of the surgery’s outcome was deeply stressful for Carol and Chris. "We had so many questions — would he walk normally, would he grow normally?" Carol recalls.
The initial post-surgery period was also challenging. Mateo was required to wear a rigid halo device while he recovered, which was uncomfortable and limiting for a spirited two-year-old. Carol and Chris found it difficult to watch their child endure this physical and emotional struggle, but also admired Mateo’s resilience and adaptability.
In those first intense weeks, the family leaned on NYU’s pediatric support teams and connected with Shannon Lozinsky, the Chordoma Foundation's Director of Patient Services and one of our Patient Navigators. Shannon provided compassionate support as Carol and Chris wrestled with the complex decision about whether Mateo should undergo additional treatments such as radiation or drug therapy — a common yet difficult crossroads for chordoma families.
Ultimately, in consultation with their medical team, Mateo’s parents decided to closely monitor him rather than proceed with additional treatments. His subsequent scans have thankfully remained clear, with checkups gradually moving from monthly to annual intervals.
Today, Mateo is nine years old and thriving. He plays sports, runs around with his older brother and now a younger sister, too, and enjoys a normal, active childhood. Though he needs to turn his whole body to look side-to-side, this hasn’t slowed him down.
Still, Carol and Chris acknowledge that uncertainty remains a part of their lives. "Anytime he has a headache, we feel a wave of anxiety," Chris says. "We know things can change quickly, so we never completely put it behind us, but thankfully those moments have become fewer over time."
Overall, Carol and Chris feel profound gratitude for Mateo’s extraordinary medical care and positive outcomes. They also continue to generously give back to the Chordoma Foundation, valuing the guidance they received and their continued connection to a supportive rare-disease community that helps families through their toughest days.
"We feel incredibly fortunate," Chris says, "and that motivates us to put more goodwill into the world."
We’re deeply grateful to Carol and Chris for their ongoing support and commitment, which help us advance better treatments and ensure that families confronting chordoma have timely access to expert, personalized guidance and resources.
Mateo’s story highlights what’s possible when families facing chordoma have skilled medical care, resources to help illuminate their path forward, and a close-knit community. Today, Chris proudly shares, Mateo is simply "a full-time kid" with many bright days ahead.