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September 1, 2020
My name is Laura, and my older sister Carol has WAGR syndrome. She was 12 when I was born, so I've never known life without her. I can't imagine what my mother was thinking, having a toddler and a teenager at the same time, but she managed and we all turned out alright! Growing up with Carol wasn't always easy. We had the typical sibling relationship that most sisters do, like me barging into her room to watch Power Rangers with her, sharing books and boy band CDs and cassette tapes, and we told on each other for everything. Our poor mother probably couldn't go a day without hearing, "Mom, she's touching me!" or "Mom, look what Laura did!" But that's all pretty standard when you're growing up with a sister.
What wasn't standard was the special needs aspect. Having a sister who needs some extra attention seemed really unfair sometimes when I was younger. My mother did a fantastic job of being open and honest with me about the diagnoses, the reasons why things were the way they were, and what was (and wasn't) expected of me, but sometimes I really resented the fact that we couldn't just be a normal family that didn't have to constantly deal with doctor visits and hospitals and people staring all the time. I hated that I had to miss school because Carol had doctor's appointments, and that I had to just sit in the waiting rooms and do homework instead of learn the lessons or see my school friends. I'll never forget learning multiplication from a kind stranger in a hospital because he saw me struggling and offered to help. I was so grateful, he not only taught me math but also to be mindful of those around me who might need assistance. Also when I was around that same age, I had to go along with Carol to many of her social activities, where there were a lot of other people with varying levels of special needs. Some of the people there made me very uncomfortable because I wasn't used to people who had more severe special needs than my sister or who had more difficulties with social skills than she has. As I got to know them a bit better though, I was able to look past their different abilities and see them for the people they really are. I saw they are wonderful people, and that my sister has excellent taste in friends. I have since come to realize that it's experiences like these that have made me into the person I am today, and ultimately I have my sister to thank for that. She is a kind, sweet, caring person who is genuine and good, and I love to watch her grow and to celebrate her accomplishments and independence. I love her, and I am so proud to call her my sister.
Age 26, Texas
March 7, 2021
This is Selma. She is 1 year and 8 months old and lives in Norway with her mom, Andrea, and her dad, Simen. Selma is a very active and happy girl full of joy for life who loves to be with oth…
February 19, 2021
This is George. He is 6 years old and lives in the south East of England with his brothers Zachary (5) and Jacob (8). George is such a light in our lives. He loves nothing more than listening…
October 6, 2020
Mia lives in the USA and is 2 and a half years old. She has two rare syndromes called WAGR-O and Potocki-Shaffer. Mia was diagnosed blind at 6 months old and at 10 months they gave us genetic…