John D. Barnes

John D. "Jack" Barnes

Wilton, NH - John D. ("Jack") Barnes of Wilton, New Hampshire, the son of Valerie Barnes of Woods Hole, Massachusetts and David Barnes of Durham, New Hampshire, passed away peacefully on March 23, 2021 due to complications resulting from a head injury. He was 33 years old.

Jack was born in Concord, New Hampshire and diagnosed at birth with Cornelia de Lange Syndrome, a rare genetic syndrome that confronted him with profound developmental and health challenges throughout his life. After spending his early years in Bedford and Temple, New Hampshire, Jack moved to Crotched Mountain Rehabilitation Center in Greenfield, New Hampshire in 2000, where he attended the Crotched Mountain School and lived in several on-campus group homes, most recently Dogwood House. Towards the end of 2020 he moved to a new group home in Wilton, New Hampshire, together with his Crotched Mountain housemates and most of the devoted Dogwood staff.

Jack found pleasure in experiencing what many of us would call ordinary life. He enjoyed moving his body, not only through organized adapted activity (such as horseback riding, skiing, biking and kayaking), but also in walking, hiking and swinging, and on his many van rides with housemates. Jack's tireless exploration of his environment demonstrated an unquenchable curiosity about the world around him. He loved to eat and found much pleasure in food as simple as goldfish crackers. Music often seemed to reach and calm him in ways that words could not.

In his short life, Jack faced many obstacles - physical, developmental and emotional - all of which he met with a rare combination of courage, grace and dignity: and, as such, he provided inspiration and perspective to all of us for dealing with life's adversity. Although he could not communicate with words, he was a great teacher. Small in stature, he was, in his own way, a giant. He was much loved by many and will be forever missed.

His impact on others did not cease with his passing, as Jack was able to donate his vital organs to better and prolong the lives of others. In providing these organ donations, it is his family's hope that he passed along not only needed body parts, but perhaps, in some indirect way, his strength of character as well. We also hope that by virtue of his donation, Jack may be able to experience, in some mystical way, the joys of life he was unable to experience in his short time upon the earth.

Jack was predeceased by his maternal grandparents, John and Elizabeth Van Arsdell, of Falmouth, Massachusetts. In addition to his parents, he is survived by his father's partner, Michelle Grenier of Durham, New Hampshire; his sister, Elissa Barnes of New Hampshire; his brother, Seth Barnes of Hawthorne, California; Seth's wife Samantha and children Cecily and Beckett; his grandmother, Ruth Wilson of Needham, Massachusetts; and numerous aunts, uncles and cousins. Jack's family also wishes to acknowledge the many others who played significant roles in his life, including his Dogwood housemates Alex, Clint and Julio; the Dogwood staff; and the countless others who taught, cared and advocated for, befriended and loved him throughout his short life.

Jack will be laid to rest at a private family ceremony in Woods Hole, Massachusetts. His family plans to hold a celebration of Jack's life in New Hampshire's Monadnock region this summer, when his family and many friends will be able to gather in person to honor Jack, his life and his spirit.

In lieu of flowers, contributions in Jack's memory can be made to the Cornelia de Lange Syndrome Foundation: cdlsusa.org.

For online guestbook & obituary please visit chapmanfuneral.com