My name is Henry Nalker, and I am 19 years old. I was diagnosed with Joubert Syndrome when I was three months old by doctors at Walter Reed National Military Medical Center in Maryland. My parents and doctors started me in physical therapy at that point. At six months, I started occupational therapy, and at nine months, I started speech and vision therapies. I continued to have speech, occupational therapy, and vision services throughout high school. I was diagnosed with kidney disease when I was five years old, also by doctors at Walter Reed. I eventually had a kidney transplant at age 14. I had to deal with many things…

In 2017, I was living a “normal” life as I thought. I was working 3 jobs and considered myself healthy. But quickly things changed. I started noticing small things that I couldn’t do such as button up buttons or open a 2 liter soda bottle. My family then started noticing other things happening to me such as weight loss and kind of leaning towards my left side when I walked. After several trips to the doctor, many tests and a little over a month, I was finally diagnosed with a spinal cord tumor. I’ve had two surgeries to remove the tumor, which have left me a quadriplegic. My life basically…

Walt Disney once said, “All our dreams can come true if we have the courage to pursue them.” I believe I am one of such dreamers with the courage to seek out success in all aspects of life. When I was six years old, I lost my elder sister to sickle cell anemia. She was only eight years old. I was young and couldn’t understand what was happening, the crowd at my place wearing black clothes and my mother’s loud wailing were unnerving. All I wanted to do then was find my sister and tell her how agitated everyone seemed. But I couldn’t find her. For some reason, she was…

Dear Scholarship Board, Thank you so much for the Bella Soul Diversity Scholarship. Although I’d like to keep my story private and confidential, I truly appreciate everyone on the board taking the time to read about my journey living with a chronic illness. Your gift of money is definitely appreciated and will used toward my tuition for grad school. Here is a picture of me 7 months pregnant, happy, healthy, and excited for my future. Best, Rosilynn Morris

Many people have heard of the disability called “cerebral palsy.” In the month of January of 1999, Mike and Renee Bennett had to hear of this disability in a very hard way. They received the news that their son, Brent, was diagnosed with this disability, actually the “official” diagnosis was periventruicular leukomalacia – in layman’s terms, cerebral palsy. They were told that their son might never walk, never speak well, or never eat well. I am blessed to say that person, happens to be me, Brent. I was diagnosed with cerebral palsy as a baby, and I have continued to live with this disability for the last twenty years of…

Living in my patient’s shoes Growing up, I never thought I would become a frequent visitor to the doctor or take more than 10 pills a day. Although every day comes with hardships, I feel blessed as I am able to walk in my patient’s shoes, since I have started my medical career. From kindergarten to 12th grade, I never missed a day of school and was seemingly in “perfect” health, yet there were signs along the way that maybe I was not so healthy. As a 5-year-old, my parents were told that I used the bathroom too much in preschool. Whenever I went to the doctor, I was prescribed…

I was born with Primary Ciliary Dyskinesia, a rare genetic disorder that causes missing or malformed cilia. Cilia are microscopic hair-like structures that help clean and filter the inner surfaces of the respiratory system, sinuses, ears, and reproductive system. So basically, I have no filter for my respiratory system! From the moment I was born, everyone knew there was something wrong with me; therefore, the first month of my life was spent in the hospital. I had a runny nose, a hard-time hearing, and a serious cough. Throughout the years, I was in and out of different doctor’s offices and they couldn’t conclude what was causing my symptoms. Then after…

Megan Zahneis is a student journalist at Miami University in Oxford, Ohio. There, she is a managing editor at the weekly campus newspaper, The Miami Student, and editor of The Miami Student Magazine, which published its first print issue in fall 2017 and was named Best Student Magazine in the Society of Professional Journalists’ regional Mark of Excellence awards. Megan will graduate from Miami in May 2019 with a Bachelor of Arts in Journalism, a co-major in Interactive Media Studies from the Armstrong Institute of Interactive Media Studies, and a minor in Disability Studies. In the 2018-19 academic year, Megan is serving a Geoffrion Family Fellow in Miami University Humanities…

When I was sixteen, I was diagnosed with a “compression of the left renal vein,”  Nutcracker Syndrome. I remember doctors looking at the CT scan and saying that it may or may not have been the cause of the pain that controlled my life for the next nine years. I was passed back and forth from specialist to specialist like a ball in a medical tennis match. No one wanted to touch me; they just threw me to the other side saying gain some weight, wait until you’re older, you are just exaggerating the pain, the blood in your urine is just your period until I was ready to resign…

For other children with Juvenile Rheumatoid Arthritis, I would recommend that you keep a balance in life. I think you have to balance the unfun parts of being sick with some fun times. If life is a balance of good experiences and bad experiences, you can’t let the bad out weigh the good. You have to have good memories to hold onto when you’re stuck in a hospital bed or missing out on an opportunity. When I think back on my time as a teenager, what I remember most clearly are the days my mother and I spent together doing fun things. When I think back on my times in…