Editor's Note: In celebration of Rare Chromosome Disorder Awareness Day, we present you Sydney! She submitted her story via our Share Your Story page, and we hope her struggles, accomplishment, and uniqueness encourage you to share yours as well!
by Sydney Alper
I was born with a rare chromosome disorder called chromosome 18q deletion. It occurs when the long arm (q) of chromosome 18 is missing. Some of the features are low muscle tone and hearing loss. I was also born with clubfoot, which is a deformed foot that is twisted so the sole cannot be placed flat on the ground. They found out I had clubfoot during an ultrasound when I was in my mom's stomach.
When I was 3 months old, my face was pale and I had to go to the emergency room. They did blood tests and said that everything was fine and to go home. My mom insisted that there was something wrong — and she was right. The doctors then said I had a chromosome disorder and I wouldn't be able to walk or talk. Somehow, I proved them wrong.
When I was 2 years old, I got help from my mom's best friend to help me talk. I’ve had 12 surgeries; five of them were because of my clubfoot. I used to wear hearing aids when I was 5 years old.
When I was in 7th grade, I was getting my bat mitzvah invitations, and after we got them, I started mumbling words, had numbness in my arm, and I couldn't walk straight. I went to the hospital and they found out I had migraine. I’ve had to do occupational therapy, physical therapy, and speech classes.
Going into high school was a real struggle for me; I have a learning disability so some of the work was very hard. But in 2020, I graduated with a Regents diploma. I went to the College of Mount Saint Vincent bridge program for two years and I did a lot during my time there: I was the social media coordinator for Best Buddies; I was the director of communications for the club’s activities board; I sang at two shows; and I was also a model for a club I was in.
I am currently living in an independent living program called the Staff Assistant Program at Ramapo for Children in Rhinebeck, New York. I’m also going to school for Early Childhood Education.
One big achievement is my Instagram account, @disabilitiesunite21, which I founded so people with disabilities can find friends just like them.
I am currently a Best Buddies Ambassador for New York State!
My parents always used to tell me that everyone is different. If everyone looked the same, the world would be so boring. When I was in fourth grade, I had to write a sentence with the word “unique.” My mom helped me and I wrote, "I am Sydney and I am unique.” Now if ever I feel different and I'm not happy with myself, I always think of that sentence.
Thanks for sharing, Sydney! We wish you all the 2LIV4 moments you could ever dream of!
Resources:
The Staff Assistant Program at Ramapo for Children is a year-round, residential transition-to-independence program that helps young adults develop social, vocation, and life skills, preparing them for next steps including college and employment. For more information, visit ramapoforchildren.org/services-programs/staff-assistant-experience.
For more information on rare chromosome and gene disorders, visit RareChromo.org.
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