Experience stories

A Closer Look: Supporting Sofia


My sister, Sofia, was diagnosed with CdLS when I was four years old. I often say that growing into my identity as a sibling of someone with CdLS came in two phases: coping with Sofia being sick, and coping with Sofia being special needs. When Sofia was in the hospital as a baby, I was so young that I didn’t quite understand what was happening. My parents were always gone with Sofia at the hospital and she was always hooked up to big machines that I wasn’t allowed to touch. I was never allowed to play with her and I wondered why other kids in my class spent their weekends playing sports while we spent our weekends playing in the playroom at the hospital. Things were often confusing and frustrating and my other sisters and I struggled with our parents being primarily focused the issues surrounding Sofia’s health.

As I got older, Sofia’s health improved and we began to navigate what life for Sofia and for us would be like in light of her CdLS diagnosis. Even the smallest of things had to center around Sofia. Decisions about vacations, family dinners, trips to the grocery store and even going to the car wash all had to be made keeping in mind how Sofia might respond or react. She was usually the priority and was constantly the center of our world. I’d be lying if I said there weren’t times when having a sister with special needs seemed totally and completely unfair. However, looking back on it, all the challenges and frustrations shaped me into the person I am today in a multitude of ways. I had to grow up faster than most kids my age, but in the process, developed patience, compassion, confidence and independence. Most importantly, however, I learned to trust that Sofia was put in our lives for a reason, and from this, I have learned so much about who I am and who I am meant to be. 

My advice to anyone struggling with a sibling’s diagnosis is to trust the process, always keep your expectations for your sibling realistic and have an open mind. Having a sibling with CdLS is not easy, but it’s the most rewarding part of my day–every single day. 

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Isabel T.

We want to thank ’s , Isabel T., for sharing ’s story with us.

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Last modified by Gerritjan Koekkoek on 2021/07/04 21:25
Created by Gerritjan Koekkoek on 2018/10/10 16:27

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