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“Glass siblings”: an unnecessary label

24 June 2024

Dear Editor,

I first heard the term “glass siblings” at a conference where parents of children with rare diseases discussed sibling dynamics. Learning about the challenges faced by “unaffected” siblings made me realize I had a unique perspective to share.

My older brother Ryan passed away in October 2023 at age 37 from Duchenne Muscular Dystrophy, a terminal muscle-wasting disease. Ryan was seven years older than me, and my earliest memories are of him transitioning into a wheelchair. Naturally, I wanted to help whenever I could. I looked up to him like any little brother, and he did everything to be the best big brother I could ask for. Helping him with daily tasks never felt like a burden—just something any brother would do. Neither Ryan nor my parents pressured me to help; it was always my choice and felt like the obvious thing to do.

When challenges arose, I asked myself how I would want to be helped if our roles were reversed. This became my mantra, shaping how I lived my life. I hate the term “glass siblings”; it’s an unnecessary label. No one wants to be called disabled, so why create a new label for their siblings? I want to be known simply as Ryan’s brother.

I advise parents to prioritize the sibling relationship first and caregiving roles secondarily, if and only when it makes sense. This approach fosters better relationships among siblings. While “unaffected” children will be impacted in ways you might not understand, it’s not all negative. My relationship with Ryan gave me enormous empathy, compassion, and a unique perspective on life’s intricacies. Because of it, I am a better person, and I am grateful that he made a lasting impression on my life.

Every sibling relationship is unique. Labels like “glass sibling” are unnecessary and can be harmful. We should focus on the strong bonds and resilience that can come from these relationships. With the right mindset and supportive family unit, these siblings can break through any barriers placed around them.

Blake Benton, Ryan’s brother, co-founder & executive director – Coming Together for a Cure

Wichita, Kansas, United States

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