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 because of kidney disease like having to drink lots of water, changing my diet, taking lots of meds, and wetting the bed every night. I had my kidney transplant on July 30, 2015, at Johns Hopkins Hospital in Baltimore, MD. I got my new kidney from my mom, and it’s an extra special connection we have. After my transplant, I still take lots of medications and drink lots of water. I carried a Camelbak backpack with a 2.5-liter water pouch throughout my schooling.
As a person growing up with JS, I’ve had motor, vision, and balance challenges. Still to this day, I have difficulty running. I also have trouble balancing on uneven surfaces. I have difficulty using my hands, such as handwriting legibly and working with small objects like Legos. I didn’t walk independently until the age of 6 so before that, I walked with a walker. I couldn’t speak intelligibly until age 6, so before that, I used sign language. I also have trouble with hand-eye coordination, so things like catching balls is hard for me. For example, I realized that catching a frisbee is easier for me to see than a ball, so before my transplant, I played on my school’s Ultimate Frisbee team. But the good thing is that I continue to get better at doing all these things and finding ways around them.
I just wrote a lot about the challenges of having JS, but I think it’s essential to also talk about how having JS has not held me back. Along with getting a scholarship at the end of my senior year, I’ve been in select groups and clubs in high school. I was a member of the ASL honor society and Tri-M music honor society. I also attended a state conference for two years called the I’m Determined Disability Advocacy Summit. The Virginia Department of Education runs it. They select 100 Virginia students with disabilities every year to attend, and it is held at James Madison University in Harrisonburg over three days. While I was there, I learned about how to self-advocate in my school and my community.
If I could say anything to another person living with Joubert Syndrome, I would say, “don’t give up even though it will be a tough road ahead.” I would also say, “don’t listen to anybody that tries to get in your way.” If I could say anything to another person living with kidney disease, I would say, “drink lots of water because that is what will keep your kidney the longest.” I would also say, “follow all of your doctor’s orders and get your bloodwork checked routinely.”
I think mental healthiness is essential to all of us, but especially people like us living with disabilities. We may tend to be depressed emotionally due to our disability, but we shouldn’t give up though. The way I deal with my mental health even with a disability is going for walks around my neighborhood, talking to friends, exercising at my local gym to clear my mind of things, among various other activities.
I also think being in good shape physically is also important. Our health (especially people with kidney transplants like me) will suffer if we don’t stay in shape physically. The way I keep in shape even with a disability is going to the gym to exercise, lifting weights at home, or even run in place in my living room.
I don’t know what my future will hold, but I will keep breaking down the barriers in my way. Whenever I fall, I’ll get back up and try over again. I’ll keep advocating for people with disabilities. If people don’t accept me for who I truly am, that is their loss.