William Russell McCurdy

McCurdy, William Russell

William Russell McCurdy, a 28-year-old Larchmont, NY native, died on Oct. 25 at Boston Children's Hospital after a life-long battle with Barth syndrome, a rare genetic disorder. Will was a role model and a hero to those who knew his quick smile, intelligence and remarkable ability to engage with the people and world around him, despite the escalating physical constraints and pain imposed upon him by his illness. He was a quiet yet shining example of the impact an individual can have on others when he strives to do his best with the gifts he is given.

Will attended Mamaroneck Central school through 5th grade, followed by Greenwich Country Day School and Rye Country Day School. In addition to his peers, he developed deep and abiding friendships with many of his teachers that continued to enrich his life well beyond his school years. His illness forced him to miss much of high school, yet he was awarded the New York State Attorney General's award for Courage, Character and Commitment.

Will was born on Jan. 23, 1986 and soon exhibited the gross motor delays that are typical of Barth syndrome. At age two, Will went into heart failure and came under the care of Dr. Michael Gewitz at what would become the Maria Fareri Children's Hospital at Westchester Medical Center, a world-class hospital where he continued to receive excellent care for 26 years. After also being found to have neutropenia (a shortage of certain white blood cells) and with the help of Dr. Ariel Sherbany, Will received a tentative diagnosis of Barth syndrome, based on the two papers that Dr. Peter Barth, a pediatric Neurologist in the Netherlands, had written by then describing the disorder. It was not until 2000 that Will's diagnosis was confirmed by genetic testing, after the gene was identified in 1996.

For years, Will knew of no others living with Barth syndrome, though he had tried to find them. But in Nov. 1999, he entered "Barth syndrome" into a new search engine and discovered the web page of Dr. Richard Kelley at Johns Hopkins which listed three mothers who were trying to gather affected families for the first-ever Barth syndrome meeting in 2000. It was at that gathering that the Barth Syndrome Foundation (BSF) was founded in part by Will's parents to spread awareness, find and care for families and stimulate research around the world (having funded over $3 million of projects to date). Will was one of the oldest males living with Barth syndrome and earned a reputation as a quiet but insightful leader and role model on the BSF family internet listserv. Reluctantly, as the subject of several news articles and a Today show segment, Will became one of the faces of Barth syndrome and BSF. He never understood why anyone saw him as a real inspiration, but it was the way in which he lived his life, with dignity and grace and a focus always on others, never on himself, that endeared him to his many friends and admirers.

Despite the physical constraints imposed on Will by Barth syndrome, his struggle and quiet perseverance inspired the creation of a group of triathletes called Team Will and headed by a family friend, Gary Rodbell. Quickly, others joined and soon Team Will was appearing in Ironman races in places like Florida, New York, California, New Hampshire, Arizona, Idaho, Wisconsin and the World Championship in Kona, Hawaii, as well as local races like the Westchester Triathlon in Rye, NY. Team Will used these events to spread awareness and raise over $1 million for BSF research. Will attended as often as he could to cheer on his friends in their grueling races, often late into the night. Each competitor understood that while his or her exhaustion and pain was temporary, Will's suffering was every day and life long. If Will could bear it, so could they.

Will's life was filled with love for and from his family and friends, and he joined in activities with them whenever he could. He leaves his adored sister, Eliza, and his mother and father, Kate and Steve McCurdy as well as an extended family of aunts, uncles and cousins and his maternal grandfather Dr. Paul Russell of Westwood, MA. He will be deeply missed but never forgotten.

Will was interred on Nov. 1 in a private family ceremony in Lakeside, MI, where his extended family has spent summers for four generations. A celebration of his life will be held at St. John's Church, 4 Fountain Square, Larchmont, NY at 2pm on Sat., Nov. 15, with a reception following the service at the Larchmont Yacht Club at 1 Woodbine Avenue, Larchmont. The family will be holding calling hours in the Parish Hall at St. John's Church from 6-8pm on Wed., Nov. 12.

In lieu of flowers, donations to the Barth Syndrome Foundation are suggested at www.barthsyndrome.org/donate/events/McCurdy or P.O. Box 582, Gretna NE 68028.