On Thursday morning, Merrick and his parents, Nancy and Matthew, along with his two ABA Centers of America registered behavior technicians (RBTs) – clinicians that are dedicated to administering Merrick with direct, personalized autism care – boarded a plane from Boston to Washington, D.C., to spend the evening trick-or-treating on the South Lawn. Dressed as No Noggin, the headless scarecrow from the Curious George series, Merrick happily raked in the candy and toys throughout the evening.

The invitation to join the Halloween festivities at the White House came courtesy of the Cure Sanfilippo Foundation, a nonprofit organization focused on pursuing every avenue to find a treatment or cure for Sanfilippo Syndrome. About a year ago, Merrick was diagnosed with Sanfilippo Syndrome Type A, which is often likened to Alzheimer’s in children and leads to progressive mental and physical decline, with no FDA-approved treatment or cure currently available. Of the four subtypes Sanfilippo Syndrome, Type A is associated with the most severe symptoms and worst prognosis. While Sanfilippo Syndrome is considered a rare disease, it is incredibly common for children with autism to have multiple maladies, in fact more than 95% children with autism have at least one co-occurring condition/symptom.

Nancy and Matthew are committed to giving their son the most memorable and adventurous childhood possible and quickly seized the opportunity on the invitation, even though they knew that traveling with Merrick could come with some challenges. But with the RBTs on hand, it was one joyous night for the history books for all involved.

“It was very helpful to have his ABA Centers therapy team there because it ended up being quite crowded and loud. It’s hard for kids like Merrick to deal with that, but he was really excited about going, so we did it – and we made it through!” remarked Nancy.

Nancy and Matthew’s mission is to support the Cure Sanfilippo Foundation’s efforts in funding critical research and clinical trials aimed at finding a cure. Through fundraising initiatives like the “Cure Merrick” campaign, community engagement, and spreading awareness, they aim to bring hope and action together to make a difference in Merrick’s life and the lives of countless other children battling this disease. More information about the efforts to find a cure for Sanfilippo Syndrome can be found on the Hope for Merrick website and Cure Sanfilippo Foundation’s website.