Orchestra Aficionado Zachary Overcomes Rare Disease Struggles Through Symphony
For seventeen-year-old Zachary, two things have been constants in his life from a young age: his undeniable passion for music and an unfortunate series of health challenges he’s had to overcome time and time again. Despite recurring sepsis infections and ketotic hypoglycemia that gave his parents a real scare as a baby and toddler, Zach made full recoveries from both and was never derailed from striving for success. He’s excelled academically all his life, and eventually discovered a special brilliance in and connection to music.
Out of mere curiosity and desire for a hobby, Zach took up cello in his elementary school orchestra for several years until being completely and unexpectedly charmed by the unique sound of the oboe at his summer arts camp. This defining moment rerouted his musical pursuits and set the stage for all his accomplishments to come. Once Zach signed up for the oboe, he never looked back. Since seventh grade, he’s devoted his free time to developing and refining his classical music talent on the oboe and has wildly impressive accolades to show for his hard work. In addition to being co-principal oboist in the Chicago Youth Symphony Orchestra (CYSO), a merit scholar at the Music Institute of Chicago, a fellow at Chicago Musical Pathways Initiative (CMPI) and a student of some of the most renowned conductors and musicians, Zach has also been recognized and awarded locally, nationally, and internationally, and volunteers in music-related community service with seniors and younger students.
A defining diagnosis
Last summer, while away at music camp, Zach’s health took another abrupt downturn. He began rapidly losing weight for no known reason and within a few months’ time could barely walk or do simple daily tasks unassisted. His pediatrician suspected an autoimmune issue and referred him to Lurie Children’s where Rheumatologist Dr. Brian Nolan was able to shed light on what Zach was experiencing. The Allen family learned Zach’s diagnoses were mixed connective tissue disease – a rare autoimmune disorder where your immune system mistakenly attacks healthy tissue – systemic lupus erythematosus, and juvenile rheumatoid arthritis. While the certainty of a diagnosis can in some ways be relieving, it was concerning to Zach not being able to fully grasp how his life would be impacted by these chronic diseases.
To best manage his new health challenges, Zach began home-based learning his junior year and a medication regimen to help manage his symptoms, from severe weight loss to swollen joints and daily fevers of 105 degrees. During this time, Zach found a way to continue prioritizing his orchestra extracurriculars and conserved his energy for lessons and performances. His mom, Denise, recalls the encouraging progress he was making and how by early 2022 he had reached many impressive milestones in health and in music.
“This summer, as I reached new heights in musical achievement, my health improved considerably,” Zach said. “I made my Carnegie Hall debut and went on a European tour with my Youth Orchestra. I was scheduled to complete my summer as a member of Carnegie Hall’s National Youth Orchestra 2 program, however, two days after returning from Europe, I suffered a stroke.”
Unknowingly, Zach had developed vasculitis — an inflammation of the blood vessels — likely due to excessive sun exposure, which can be especially harmful to people with autoimmune diseases. Specifically, a blood vessel in his brain stem had swelled, causing his stroke. At Lurie Children's, Zach’s care team determined chemotherapy was the best course of treatment to target his vasculitis and he's been undergoing treatment since July. Yet again, he was forced to face a trial that threatened “normal” life and his music dreams, just before his senior year was about to start.
“Missing junior year because of his new diagnoses was traumatic for him,” Denise said. “Everyone went back [to in-person classes] after missing sophomore year due to COVID. After missing out on two years in a row, he was determined to be in person for his senior year.”
After a new treatment plant was determined, Zach’s doctors cleared him to do what he felt comfortable with, and while the stroke had impacted his eyelid and eye movement temporarily, it fortunately didn’t hinder his dexterity. He was quick to put this to the test on his oboe during post-stroke recovery and was eager to get back to doing what he loved.
Persevering with passion
Even during the last few months of chemo treatments, Zach’s dedication to his practice has never wavered. He defines music as both his “solace” and “salvation,” and with every physical and mental struggle he's faced, he's never missed a beat in working to make his orchestra dreams a reality.
Zach recently played his first performance back with the Chicago Youth Symphony Orchestra since his stroke, just weeks after his 18th birthday and last round of chemo. As he continues to recover and progress in his health and therefor his talents, Zach has his sights set on some of the most prestigious classical music programs in the country. He’s in the process of applying to the Juilliard School, Princeton University, and Oberlin Conservatory, among others.
Long term, Zach has dreams to play professionally in an orchestra ensemble, conduct, and maybe even return to a leadership position with Chicago Music Pathways Initiative: an organization dedicated to helping develop and support gifted orchestral students from underrepresented backgrounds.
“The rheumatology department at Lurie Children's has been ridiculously awesome,” Denise said. “Dr. Nolan is the nicest person ever, and Dr. Klein-Gitelman has done everything she can to help Zach thrive now and as he prepares for college.”
While he’s faced more hurdles than one should have to at such a young age, Zach’s ambition has always propelled him toward his next step, his next note, where he’s truly found his forte.
“The most important thing that I’ve learned through all of this is to focus on making progress where progress can still be made,” said Zach. “There will be setbacks and my progress may slow down or even stall, but two steps forward and one step back is still a forward momentum.”
Sign Up for Our Newsletter
Get health tips from our pediatric experts, news about ground-breaking research, feel-good moments and ways to get involved with us delivered right to your inbox.