Insight Into Growing up Alongside a Sibling With a Disability
The relationship shared between siblings is experienced by many. However, when one of those siblings has a developmental disability, it becomes something unique entirely. My older brother, Kyle, the oldest of four siblings, has a rare genetic syndrome known as Nicolaides Baraitser Syndrome (NCBRS). This is an extremely rare syndrome with fewer than 200 people around the world currently diagnosed. Its key characteristics include intellectual disabilities, seizures, and dysmorphic features. Although we always knew that Kyle had some form of a disability, it wasn’t until he was 21 that he actually received a diagnosis. Upon Kyle’s diagnosis and now getting older myself, I have become a lot more invested in Kyle’s care as well as disability advocacy. I’ve had the opportunity to speak to families with children who have NCBRS and doctors from all around the world. Through my experience, it’s dawned on me how little information there is on the sibling relationship when it comes to disabilities. I hope to provide more insight and understanding on this unique relationship.
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