Meet Zion, our 2024 Champion Child.
Zion is many things – a son, a student, an Instagram dance sensation and – thanks to your support – a rising Glockenspiel star at the Merit School of Music.
At twelve years old, Zion is a budding musician on track for success. He also has profound bilateral hearing loss.
When Zion’s mom, Danielle, noticed a speech decline around three years old, she had his hearing tested. Telling Zion’s story means telling Danielle’s story too. A single mom without a background in special education or hearing issues, Danielle has stepped up to become Zion’s greatest advocate and a mentor and inspiration to many other deaf and hard of hearing (DHH) parents.
As a toddler, Zion was implanted by FHSR partner Dr. Nancy Young at Ann and Robert H. Lurie Children’s Hospital of Chicago with two cochlear implants. Sitting in the waiting room of Dr. Young’s clinic, Danielle saw a poster advertising FHSR’s Music to My Ears (MTME) scholarships and decided to reach out. Your support of FHSR’s MTME program means that we can provide tuition-free instrument lessons to children just like Zion across Chicagoland. FHSR Executive Director, Kristen Van Dyke, matched Zion with Frances Kennedy at Merit, with the intent of enrolling him in piano lesson
Did you know that an estimated 40-60% of children with hearing loss also have at least one other diagnosed disability? The true number may be much higher. FHSR adapts all of our programs to meet the unique needs of these “deaf with disability” (DWD) young people, so that all of our children can reap the benefits of our innovative and proven programs.
However, in addition to his hearing loss, Zion has Holt-Oram syndrome, which affects his hands and heart. At three months he had open heart surgery; Zion is also missing his radius on both arms and has only three digits on each hand.
Due to his limb difference, piano was not a great match for his abilities (or terribly interesting to him), so Frances pivoted, introducing the Glockenspiel (xylophone). It was then that Zion began to thrive. He has “an unbelievable sense of rhythm,” France says, on par if not better than some of her much older students. His creative rhythm and pitch ideas led Frances to start helping him compose his own pieces and improvise on the instrument – something she hasn’t done with any other student before. Earlier this year, Zion wowed the crowd at a Merit recital with his original composition, “Telephone Song.”
Zion’s mother, Danielle, says that her goal for him is to be an independent person, who knows that he is not limited by his deafness or his limb difference. Her tireless efforts on behalf of her son are certainly paying off, and he is well on his way to a successful future. “We all need a little bit of help,” Danielle says, “I thank FHSR for the opportunity to have these music lessons.”
Zion’s story is an example of how FHSR’s child-centered approach combines the latest in research-baked methodology and expert teaching with the individualized approach that allows the adaptation needed so that every young person can thrive.
In 2025, we are focused on access and equity. Will you join us to make sure no deaf or hard of hearing child goes without the high-quality support FHSR provides? Your donation will help us continue providing all of our programs free to parents like Danielle, and is a sound investment in all of our children.
