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BACKGROUND The purpose of this analysis is to report long-term health related quality of life (HRQoL) among brain tumor survivors treated with proton therapy (PRT) at a very young age. METHODS Fifty-nine children < 4 years old received PRT between 2000-2011. Forty families participated. HRQoL was assessed by child self report (CSR, age ≥ 5) and parent proxy report (PPR, age 2+) using the PedsQL Core. RESULTS The median age was 2.5 years (range 0.3-3.8) at PRT and 9.1 years (5.5-18) at last follow-up. The most common diagnoses were ependymoma (n=22), and medulloblastoma (n=7). Median follow-up is 6.7 years (3-15.4). Follow-up mean CSR and PPR scores were: total core (78.4 and 72.9); physical (82.9 and 75.2), psychosocial (76.0 and 71.6) emotional (74.4 and 70.7), social (81.2 and 75.1), school (72.4 and 69.9). Parent-reported HRQoL fell within a previously defined range for healthy children in 37.5% of patients, and for children with severe health conditions in 45% of patients. PPR HRQoL was stable from baseline to last follow-up among all domains except for the social functioning. History of gastrostomy-tube was significantly associated with poorer CSR and PPR HRQoL on multivariable analysis. Ninety-percent of children functioned in a regular classroom; 14(36%) used a classroom aid, 9(23%) used an outside tutor, and 18(46%) had an individualized education plan. CONCLUSION Long-term HRQoL among brain tumor survivors treated with proton therapy at a very young age is variable with over a third achieving HRQoL levels commensurate with healthy children.