Daniel

Daniel “Danny” Bennetts was diagnosed with an Atypical Teratoid Rhabdoid Tumor (ATRT), SHH molecular subtype, at just four months old. After his parents noticed sunsetting eyes and daily vomiting, they took him to Vanderbilt Hospital in Nashville, where a CT scan confirmed a mass on his brain. He immediately underwent emergency surgery to biopsy the tumor and release fluid buildup.

Because the tumor is located in the pineal/tectal region near the brainstem, it is considered inoperable. Danny also developed hydrocephalus as a result of the mass, requiring an endoscopic third ventriculostomy (ETV) to manage the pressure.

Following the diagnosis, Danny began the ACNS0333 treatment protocol. He has responded very well to chemotherapy, showing an approximate 75% reduction in tumor size after only two induction rounds. Although the family was living in the United States at the time of his initial surgery, they made the difficult decision to return home to Australia so Danny could continue his care surrounded by the support of their family.

“Navigating intensive treatment while being spread between countries was incredibly challenging for our family.” 

They have since returned to the United States and are currently located in Jacksonville, where Danny is receiving proton radiation therapy. Since this treatment is not currently available in Australia, they expect to remain in Florida for approximately two months before heading home just in time for Danny’s first birthday.

“This journey has been extremely difficult, but we are deeply grateful for the family members who have supported us every day, helping with appointments, caring for our other children, and providing strength when things felt overwhelming," his family expressed.

Despite the clinical challenges, Danny remains the center of his family's world. He is deeply loved, and they are doing everything possible to ensure he has the best chance moving forward.

To follow Danny’s story or offer support, please visit his page: https://gofund.me/4b2a14e8a