Atypical Terratoid Rhabdoid Tumor (AT/RT) is a rare tumor usually found in children. Approximately 30-35 new cases are diagnosed each year in the United States (or 3 per 1,000,000 children). AT/RT is highly malignant and is usually found in the brain (as was the case with Will), but can be located in other parts of the central nervous system including the spine. Rhabdoid can also spread to other soft tissue areas, which explains Will’s tumor in his right thigh.
Because it is so rare, there is not an abundance of information on AT/RT out there. The links below will better explain Will’s diagnosis. In addition, the pages below will provide links to other families dealing with this devastating disease.