Susanne Marie Gravelle of Westport died this morning. Her death — at just 45 — ending a long battle with bvFTD.
Family and friends say her beauty and laugh will not soon be forgotten.
“Susie” was born on February 10th, 1974 in Garden City, New York. She graduated from Garden City High School in 1992 and headed to the University of Massachusetts, where she expanded her love of the arts and painting. As a senior she met a sophomore named Jeff, whom she later married.
After graduation Susie moved to Boston, and pursued a master’s in art education. She then taught art at the Churchill School in New York, and loved helping shape creative young minds.
Jeff and Susie married on August 9, 2003. They moved to Connecticut the next year.
Their home in East Norwalk became a meeting place for family and friends. Susie loved a great party, and late nights and memories were created around the pool and firepit. She was proud of her home and the time and effort that went into their construction projects, design, and decorating. Susie used the rooms of her home like a canvas, painting pieces that added personal touch and comfort.
Her greatest works, however, are her boys, Gavin and Julian. Planning daily art projects and activities came naturally for Susie, so she and the boys were often found around the activities table in the playroom. Susie actively participated in fundraising and event planning for A Child’s Place, where the boys attended preschool.
Susie was a very accepting, practical woman and proud of her frugality. She enjoyed simple daily pleasures like a chai latte, trash magazines, and a great penne Pomodoro. Working out, eating well and finding the next anti-aging serum reflected someone who took effort to take care of herself.
Something changed though, around 2010 and 2011, and no one in Susie’s life could quite put a finger on it. Indifference, selfishness, and denial were not characteristics that anyone had ever used to describe Susie.
After moving to Westport in 2012, relationships and boundaries with friends and family became strained, and her marriage ended in divorce.
The escalation of behaviors that were out of character for Susie seemed to pile up by 2013, especially 2014. Jeff and Susie’s family took action at the end of 2014. After more than a month of testing at multiple facilities, the Menninger Clinic in Texas diagnosed Susie in February of 2015 with the behavioral variant of FTD (Frontotemporal Degeneration-Dementia).
No one in the family had ever heard of FTD, but even a cursory review of symptoms assured Susie’s family that the diagnosis was correct. By the time Susie returned home from Texas, her ability to process this terrible news or even get upset about it was gone.
Susie spent the remaining 4 years of her life at the Maplewood facility at Stony Hill, in Bethel Connecticut. Susie’s family rallied around her, and Jeff and her boys visited most weekends.
She still maintained a childlike sense of humor and the Gravelles made the most of their time spent being silly, playing catch and watching movies.
Throughout the various stages of her disease, and until Susie lost the ability to speak over 18 months ago, there was one thing she always made clear: Susie never failed to mention that she loved her boys. Even after she lost the ability to communicate verbally, her innate maternal instincts overpowered a disease that strips its victims of emotions. Susie’s eyes lit up, and she never stopped hugging and kissing her boys.
Susie enjoyed frequent visits from friends, and loved her caretakers from Maplewood. She was surrounded by love, and cared for every day by her trusted aide Iris, and others upon whom Susie had a profound effect.
Fortunately for Susie, the effects of this cruel disease that stole her essence nevertheless freed her from fear, upset and wondering, ”why me?” She was happy and smiling until the end.
Susie leaves behind her two sons Gavin and Julian, her ex-husband Jeff, her father Phil, her sister Lisa, and nieces Catherine, Abigail and Ellot. Her family will celebrate her life with a private ceremony.
In lieu of flowers, her family has set up a GoFundMe page to raise money as a gift for those caretakers at Maplewood who helped Susie around the clock, as well as a donation to research in her name at AFTD, and a small memorial.
The hallmarks of bvFTD are personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy.
Unlike in Alzheimer’s disease, memory is usually relatively spared in bvFTD.
People with bvFTD typically do not recognize the changes in their own behavior, or exhibit awareness or concern for the effect their behavior has on the people around them.
FTD’s estimated U.S. prevalence is around 60,000 cases, yet many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.
For more information, click here.