Austin S. Leclaire

Austin Scott Leclaire of Saugus, MA, passed away suddenly on February 1, 2025.  Austin came into the world on December 12, 1998 and immediately took command of his surroundings.  He was happy from the first moment and his big smile remained his most notable physical quality throughout his 26 years.  As a young child, his adventurous nature and his need for speed led to some sketchy moments and a multitude of legendary stories, from trying to fly off the top bunk to being the kindergarten ringleader.  By the time he was 9 years old, he was a licensed boat captain, an expert fisherman, a falconry aficionado, an adaptive skier at the Paul Newman Double H Ranch, a food critic, and an aspiring world traveler.

As he entered high school, band camp and marching band provided Austin with many opportunities to achieve his goal of travel, with visits to New York City, Disney World, and locations all across New England.  Austin did not let his use of a power wheelchair determine his choice of instrument, selecting the drums for the marching band with an army of friends and teachers who were happy to help him keep his unique beat going.

Austin tackled his quest to become an athlete with the same unrestrained attitude he took with everything in his life…determined to excel and deliver memorable performances.  He participated in power soccer with many teams in New England over the years, landing with the Boston Breakers where he predominately played the goalie position and went to the national championships over multiple years.  For a short time, he played Volt hockey and got to travel to Sweden as part of the first US team for the sport in 2022.  Every winter he participated in snow skiing with the Loon Mountain Adaptive Ski Program sponsored by JB’s Keys.  He further enjoyed skiing with his family (when they could keep up with him) at Cannon Mountain in New Hampshire.  He also had a great time with adaptive sailing.

Always one to put his best face forward, Austin also was a successful “rolling” model and had several bookings with life science companies focused on humanizing the drug development process.  He took pride in his appearance and tried many hair and beard styles, including the most recent red pompadour and long perfectly groomed beard.

Among his friends and family, Austin was perhaps best known for his sense of humor, his creative pranks, and his love of 90’s Hip Hop.  The pranks peaked every summer during his years at the Double H Ranch, where there is now a rule against ghost peppers. He took his creative comic genius to the next level in the years before his death and became a regular in the Boston comedy scene, calling himself a “sit down” comic who was not appropriate for grandmothers.

Austin and his brother Max were diagnosed with Duchenne muscular dystrophy and the family participated in clinical research throughout much of the past 15 years.  They became central figures in the quest for patient-focused drug development at the FDA, particularly around the first US drug approval for Duchenne.  The family’s work has been well-documented in movies, news articles, programs, and research.  In 2017, Austin and his mother Jenn McNary were the recipients of the UCLA Center for Duchenne Muscular Dystrophy’s Meyer-Whalley Instrument of Change Award.  Austin strove to extend his advocacy efforts and in 2019 co-founded One Rare, a non-profit that is dedicated to improving and enhancing the lives of young adults living with rare disease.

At the time of his death, Austin was working on completing his mechanical engineering degree at Bunker Hill Community College, where he made the Dean’s List and had bystander certification. The focus of his engineering work was accessible modifications to everyday tools and products, like bigger remote-control buttons, movement and lift systems, and any technology or hack to enhance his quest for independent living.  In looking toward the future, Austin wanted to focus his further education and career on biomedical engineering.  Austin completed an internship at Solid Biosciences, and had also worked as a consultant at Parexel International and Medable.

His personal magnetism extended to animals and he was surrounded by a multitude of pets throughout every stage of his life, including hissing cockroaches, snakes, lizards, hedgehogs, turtles, guinea pigs, doves, his Make-A-Wish horse Anson, Spanish-speaking parrots, ferrets, sugar gliders, and numerous dogs and cats, namely his 15-year-old dachshund Izzy and wannabe service dog Miso.  When Miso failed her service dog certification, Austin dubbed himself her “emotional support human.”  She was at his side until the end of his life.

Austin leaves behind his beloved family, an extra-large circle of friends, and countless acquaintances who have reached out since he died to let his family know of his impact. His mother Jenn McNary, siblings Max Leclaire, Joselyn Petersen (Leclaire), James McNary, Norah McNary, Mia McNary, and Hazel McNary, and his niece Ashlyn Petersen. His loving grandparents Laurie Webb and Bruce Moore and aunts, uncles, and other extended family. He also spent many years with step-siblings Tyler and Kiarra McNary.   Austin would say he had many best friends throughout his life, including Harrison Clark, Gabe Mollica, Jake Wesley, Patrick Claflin, Caroline Claflin, Sam Safford, Dylan Miceli-Nelson, Seth Rotberg, Mike Struharik, the members of the PPMD PAAC, members of his sports teams, his Boston comedy crew, the One Rare community, and his amazing team of nurses and caregivers both at home and at Mass General Hospital, Nationwide Children’s Hospital, and the Children’s Hospital of the King’s Daughters.  His family extends their gratitude to those who loved him and cared for him.

Austin embraced all of his passions with unmatched vigor, as if he wanted to cram a lifetime of experiences into every day.  Even as his condition progressed and made him weaker, he maintained his desire to travel, especially when it came to visiting those he loved.  His favorite destination was southern California to visit his “second family,” the Miceli-Nelsons.  He was grateful to have visited Arizona to meet his niece Ashlyn and was looking forward to returning soon so he could know her as she grew up. We take comfort in one of Austin’s favorite sayings, “I am not here for a long time, I am here for a good time.”

Please save the date for a celebration of life in the Boston area the week of May 5, 2025.  Details will be posted here and on social media.