MILLBURN, NJ - Zachary Levine, a Millburn High School 10thgrader, has turned his lifelong love of music into being a valued member of the high school band. Zach’s mother Natalie Hiott-Levine explains that Zach “has a wonderful ear for music that compensates” for his blindness in one eye and significant vision loss in the other eye as well as other disabilities.  Zach joined the school band in fifth grade and he now participates in all band activities, including concerts and football games. Zach proclaims that “the best part of being in the band is that I am good at drums and enjoy participating,” although it was “nerve-wracking at first.”

Ms. Hiott-Levine explains that “although [Zach] was born with it, doctors only recently were able to diagnose him with a rare disorder called spondylo-ocular syndrome (SOS), which is caused by a mutation on the XYLT2 gene. Among other things, SOS has caused Zach to have fragile bones, cataracts, and repeated retinal detachments leading to blindness in one eye and significant visual impairment in the other, as well as some hearing loss. As a result, Zach has suffered many fractures and undergone numerous orthopedic and eye surgeries since infancy and did not hit his developmental milestone like other kids.” There is currently no cure or successful treatment for SOS, which Zach calls his “eye and bone syndrome.” His parents hold out hope that now that researchers know the cause of this debilitating syndrome, they will someday be able to develop some therapeutic help.

Rosie Holland is a paraprofessional Millburn High School, who has assisted Zach so that he can attend classes and participate in his education. She is a fellow musician who helps him with notes, rhythms, and timings for each piece. She explains that “in band, Zach is focused and engaged and that the other band members are lovely to Zach.” She further states that “Zach is involved in all parts of the band and he gets a sense of accomplishment when performing, even though he is not the center of attention. Band is the highlight of his day and it gives him great joy. We have worked with the band director to create a useful way for him to learn the music.”

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Mindy Scheierman, the MHS Band Director, states “I am happy to have Zach in band as a member of the percussion section. I remember working with Zach briefly when he was in fifth grade band and know he participated in band at the middle school. I am glad he can continue to have music in his schedule in high school. He’s having a great time.” She further notes that “the collaboration among Zach, Ms. Holland, and myself in each band class allows Zach to be successful in rehearsal and at the concerts.” 

Zack also assists Ms. Scheierman with taking attendance and music library filing – life skills that he can draw upon after MHS. Ms. Scheierman adds that “band class is so much more than playing music. It inherently teaches cooperation, collaboration, time management, and research continues to suggests its causal relationships with every other academic subject content area.”

Zach’s mother, Ms. Hiott-Levine, did not have concerns about Zach participating in the band. She is “always concerned about his physical safety and losing his vision made playing in the band even more difficult because he couldn’t see the music or the conductor.” However, she was not going to let that stop him. She explains that in addition to having a wonderful ear for music, he also has great musicians teaching him at school and privately. When Zach was in the hospital in the fall, the goal of returning to the band and playing in the Thanksgiving Day football game, motivated Zach to work really hard during physical and occupational therapy sessions. Ms. Hiott-Levine explains that the physical and musical therapists would incorporate drumming and music into his sessions “to work harder, stand longer, and develop stamina to play through one entire song.” She goes on to say “Zach may be differently abled in ways that make every day things more challenging to him, but …” band gives him a platform to showcase his talent, gives him a feeling of belonging and fitting in, and gives him a sense of pride.” She emphasizes that the MHS teachers and staff “have far exceeded expectations and have been great about working with Zach and his family” and that “the school community has been extremely supportive of Zach.”

After Zach was hospitalized for a couple months in the fall, he returned to school only the day before the Thanksgiving Day game. The band director was supportive of Zach and with the help of accompanying paraprofessional Howard Shirley, Zach, still in a wheelchair and sitting on the edge of the field in front of the band, was able to participate in playing with the band. The band conductor and director relayed the next song down to Zach (“like a game of telephone”) and he picked up the beats and as his mother raves “played incredibly well given the length of his absence and despite being unable to see the conductor. I cried tears of joy at the job that he did, and the amount of support he received from his fellow band members and those in the crowd.”  

After high school, Zach would like to play music for sick children because it helps them to learn to express themselves through music. He was inspired by a man named “Bill” who played guitar at the hospital.