An NBIA Disorders Association intern describes growing up with an affected sibling

April 2022

By Katherine Fox


Kevin and me at one of his
Miracle League Games, circa 2010.

The bond between siblings is undeniably special, but being the sibling of someone who has a disability has its own kind of uniqueness. My older brother, Kevin, was diagnosed with PKAN when I was very young. And even as the youngest of three children, I was a close participant in Kevin’s NBIA journey.By age 7, I was much more acquainted with doctor visits and hospitals than my peers. But I also was introduced to an amazing community of people who I otherwise wouldn’t have known.When I was about 10, most of my Friday nights were spent at Kevin’s Miracle League games, a guaranteed bright spot in my week.

It was comforting gathering with others who understood the intricacies of how a family dynamic is shaped when someone has special needs. The sense of community at those events was indescribably special, and I felt extremely lucky to be a part of it. I’ve learned there’s a lot you can’t control when you grow up with a terminally-ill sibling. I couldn’t control how he felt, the status of his health or the available treatment options. It was hard at times, but witnessing Kevin’s never-ending strength and perseverance helped me through it all.At the end of the day, there was nothing better than seeing his huge smile while we watched “Sesame Street” every night. Little moments like that are among my most cherished. When I entered the scary world of high school, Kevin’s smile had the power to make any school stress or drama fade into the background.


Kevin, our sister Madeline, and
me on his 20th birthday.

Although I didn’t have much involvement with the NBIA Disorders Association as a child, I knew as I grew older I wanted that to change. As part of my undergraduate degree, I am required to complete an internship with an organization of my choosing. I’ve been fortunate to do that internship with NBIA Disorders Association. It has helped me grow as a writer and learn so much about NBIA, and, in turn, my brother. Now I feel closer to him than ever, and I’m grateful that this educational experience gave me that opportunity.




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