Living with Autism: Advocate and Loving Mother Theresa Sweeney Shares Story of Her Son, Noah

Earlier this summer, Partner & Special Care Planner Brian Marino had the opportunity to attend the National Autism Conference in Cleveland, hosted by non-profit Milestones Autism Resources. The Milestones Autism Conference is one of the country’s largest gatherings for educators, therapists, adult providers, families, and individuals with Autism Spectrum Disorder (ASD).   

Being one of a small number of Chartered Special Needs Consultant designees in the state of Ohio and a founding member of the Special Needs Planning Team here at Skylight, participating in this event is beyond rewarding for Brian. “Having worked with so many families that have children with Autism, I have seen the struggles that providers and family members face firsthand. It can be incredibly difficult for a person to know how to navigate through this very specific landscape, which is why attending a conference like this is so important—to educate and provide resources to the autism community when they need it the most.”

Over the course of the two-day event, Brian had the chance to meet hundreds of individuals and families living with ASD. “Every person I met had their own story to tell that was both unique and inspiring, with many of them facing uphill battles every day.” In addition to connecting with attendees, Brian also arranged a raffle for a free iPad. After a random drawing, Brian had the chance to meet the winner, Theresa Sweeney, and hear the story of her son, Noah.

Theresa is a Lakewood, Ohio native who gave birth to her son Noah on September 7th, 1996. “At first glance, Noah appeared to be in perfect health” Theresa wrote in a statement, “but after six months Noah started to become extremely sick, suffering from severe lung infections that resulted in what seemed like endless hospital visits.” After many years of hospital beds, specialists, and speculation, Theresa discovered her son had Gaucher Disease.  Also referred to as “nGD3,” this ultra-rare and degenerative brain disease is currently without a cure or any known treatment. As data on this terrible disease grows, researchers are now finding a link between Gaucher Disease and Autism—an additional diagnosis Noah received at age 16.

Through thick and thin Theresa remains a zealous activist and loving mother. “Lots of doctors have given up on Noah, but I refuse to stop fighting for him. Over time I have become a fierce medical advocate, and he has really thrived because of it. Noah is now 23 and still walking, talking, and enjoying life—especially the Cleveland Monsters hockey team! When Noah found out that we were selected for the iPad giveaway he was elated! As he continues to battle his diagnoses, it is kind gestures like this that really brighten up his day.”

“I was truly moved by Noah’s story and Theresa’s commitment to battling for her son” stated Brian. “Millions of people across the country are living with Autism, which can be just one of multiple diagnoses people like Noah face. Awareness and community support go a long way for those who are a part of the Autism world. The people over at Milestones understand this better than anyone and I look forward to working with them in future initiatives.”

Learn more about Milestones and the Gaucher’s Disease at the links below:

https://www.milestones.org/  |  https://www.gaucherdisease.org/about-gaucher-disease/what-is/

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