A gift of music for Patrick
A slight turn of the head or tap of the fingertips means music for 16-year-old Patrick.
It’s a wish come true for Patrick, who was born with a rare neurological disorder. He is nonverbal and confined to a wheelchair, but his Soundbeam 5 machine, given to him by Trumbull-based Make-A-Wish Foundation, uses ultrasonic sound beams that sense his movements and triggers sounds. His face lights up and he makes happy noises as he learns that he is making the music change.
“It allows him to vocalize and reach out and connect,” his music therapist, Cassandra Mulcahy of Connecticut Music Therapy Services, said. “It shows him he has an impact on the world.”
Patrick lives at St. Vincent’s Special Needs Services in Trumbull, though his legal guardian, Mary Kent of the state Department of Children and Families, said they would love to find a family to adopt the teen.
Life threw another challenge at Patrick when he was diagnosed with leukemia. Music therapy helped calm his stomach when it hurt after treatments and helped brighten his mood. He has been in remission for about a year now, but the music therapy continues, twice a week, and he looks forward to it, Kent said.
Last Thursday a group gathered to give Patrick his wish. The machine, which can be used by the most physically challenged individuals, sells for about $8,000. The Soundbeam was provided by Soundtree, a company that specializes in music technology. Soundtree describes the device as having up to four ultrasonic sensors that send out bearms of ultrasonic pulses — similar to a bat’s sonar, too high in pitch for us to hear — listening for echoes from any interruption of the beam and converting them into instructions for playing electronic musical sounds.
When volunteer “wish granters” Julie Dunn and Terry Cutler originally met with Patrick, they discussed several options for his wish. He couldn’t tell them what he wanted but they knew that music was something he loved, it was his hobby, Dunn said.
So rather than a trip to Disney, they decided to get him something he can use all the time.
“We set out to find something that can bring the most joy,” Dunn said.
A positive aspect of the Soundbeam is that staff can turn it on and let Patrick use it on his own. He doesn’t need to be supervised the entire time, as he would if using some other music devices. Mulcahy said the machine has several different sound sets and demonstrated jazz sounds, starry night sounds and more, as she tried to find one Patrick liked best.
“I can take out my guitar and accompany him,” she said. “We can make music together.”
Debbie Cook Artinian, a wish manager with Make-A-Wish, couldn’t believe the change she saw in Patrick once he began using the Soundbeam. When she visited Patrick he was quiet and not moving much. It was a different story when he began to use the Soundbeam.
“It’s really amazing to see,” Artinian said.
Member of Soundtree traveled from New York, despite the snow, to see the wish come true, and staff at St. Vincent’s Special Needs Services also gathered last Thursday, including Ray Baldwin, CEO of Special Needs Services.
The wish celebration last week wouldn’t be complete without cake and balloons. Patrick responded positively to all the attention and fed himself a piece of cake, which shows how he is growing, guardian Mary Kent said.
“He has been feeding himself for a year and a half,” Kent said. “He will continue to learn and grow.”
While Patrick is limited, he communicates in his own way.
“He can interact,” she said. “He can let people know when he is happy and unhappy. He can’t say it, but he can communicate.”
Anyone interested in adopting Patrick may contact Kent at 860-418-8259 or email@example.com. Despite a challenging life, Patrick isn’t so different from most people.
“Through it all, he is smiling,” Kent said.