May is Williams Syndrome Awareness Month. According to the Williams Syndrome Association, Williams syndrome (WS) “is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music.” This is the first of two blog installments to highlight four of our BHMA students with WS.
Joey Gagnon
Joey Gagnon, 24, will graduate from BHMA’s Two-Year Transition Program in just a few weeks. Following graduation, he will transition into BHMA’s LIVE Program, marking another step on his journey toward independence. Walking across the stage into a new era of his life will be a momentous occasion—one Joey never thought he would reach. Joey has Williams syndrome, but at BHMA, he is known more for his kind smile and enduring positivity. When he thinks of all he has achieved up to this point, he gets “very emotional and happy,” because it has not always been the easiest ride.
Joey is from Ontario, Canada, and the distance from home, coupled with typical growing pains, made for a challenging first year at BHMA. What followed, however, was a successful and smooth second year. Joey came into his own, and he learned to believe in himself. As his Residential Advisor Ben O’Neill-Abel writes, “Joey consistently rises to whatever challenge is before him. He has grown tremendously since coming to BHMA through his own efforts and perseverance.” Joey credits Self-Advocacy Group with teaching him how to stick up for himself, as well as how to advocate for his feelings. At the same time, classes like Circles and Cooking have instilled in him social skills and independent living skills. He has learned countless lessons at BHMA, and as he says, I am “very excited and very proud of my accomplishments.”
Joey is truly engaged in his education and his journey at BHMA. He takes piano, voice, and percussion lessons, in addition to participating in World Music Ensemble, Jazz ‘n’ Soul, and Rock ‘n’ Roll. He is also a part of Boltwood, Best Buddies, and Special Olympics bowling. A lover of confetti and the Backstreet Boys, Joey says his favorite part of being a college student is that it gives him the ability to be himself. He plans on continuing down his musical and “magical” journey as part of his LIVE Program experience, and he wants to share his story as well. "I am very good at being inspirational,” he remarks with a smile. Joey’s victories and his drive to be the best version of himself inspire all of us at BHMA.
Emily Webster
“I have learned to not be afraid to talk about it,” says Emily Webster, 30, speaking of her life with Williams syndrome. She is proud of her disability, labeling it as mostly a blessing. As she describes, people with WS are friendly, and sensitive to feelings, sounds, and textures. Emily is very articulate when she speaks about her disability, and even adds that WS affects just one in 10,000 people. Because it is a rare genetic condition, many people do not understand what WS is, and thus may have trouble accepting the differences that arise with it. Admitting that she felt excluded in high school, Emily states that BHMA is a very welcoming environment, one in which she feels fully accepted.
Emily graduated from BHMA’s Two-Year Transition Program in 2015, and then entered our LIVE Program where she has happily thrived over the past few years. Emily is actively involved in her BHMA experience, capitalizing on everything the program has to offer. Musically, she takes voice lessons, participates in African Drumming Ensemble, and is a longstanding member of LIVE Band. As Andy Anderson, who works closely with Emily, writes, “Emily's musicality, and most notably her ability to engage in group music experiences, makes her an asset to the LIVE Band and contributes to all the successes of the group.” She is continually working hard to cater to her unique voice, and she likes to write her own songs. Emily has big musical dreams, such as becoming a member of the Troupe, and releasing her own CD. “I cannot imagine my life without music,” she declares. Emily’s well-rounded college experience also includes being involved with Boltwood, Best Buddies, and Self-Advocacy Group, in addition to serving on the Human Rights Committee. She participates in SOMA bowling as well, and won two gold medals during the recent winter season.
“I am completely independent,” says Emily, who now lives in a house she used to share with her parents. In an effort to allow Emily to experience what it means to be independent, her parents moved out of the area. She now lives with fellow BHMA student Mary and caregiver Cindy. Emily proudly proclaims that she cleans the bathroom, cooks, and takes the PVTA by herself. She has also worked at Big Y in the bakery department for three years, where she spends her time packaging pastries. Emily gets paid for working, as well as for going on musical gigs with the LIVE Band. She is very appreciative of her parents offering her unconditional support, and giving her room to grow on her own. She also credits the supportive staff at BHMA with encouraging her to succeed. And though she is quick to acknowledge the role that others have played in her victories, Emily also has herself and her resilient spirit to thank for her achievements.
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