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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 to YouTube on his iPad, going to the park on the swings, and rolling anything that is slightly round on a hard floor (including my sugar jar, cups, deodorant cans and mascara, to name just a few!)
Although George is still completely nonverbal at 6, he definitely makes himself known in other ways. He’s as strong as an ox and will pull you to the thing that he wants, or grab your hand to turn on a toy.
You definitely know when George is unhappy, as he has a scream that could break glass. Lucky for us, his frustrations are minimal just now which is a testament to how resilient this boy is considering he has no speech and very limited communication.
George loves to laugh, gives the best hugs (although you do have to be careful he doesn’t smother you, as he is so strong!) and is an extremely happy boy.
When he was born, we were devastated to get the WAGR diagnosis when he was just 3 weeks old. We only had google and Wikipedia for reference back in 2014, on that long journey home from a London hospital, and it’s fair to say we were blindsided. Fast forward 6 years, and in-spite of all the worry and ‘what ifs’ around his diagnosis, we have a really happy child who loves life regardless of being registered blind and profoundly developmentally delayed. He’s had 4 reconstructive surgeries due to his genitourinary abnormalities and an artificial lens inserted to his right eye due to a large cataract, all before he was 2 years old.
I love the term #WAGRstrong, as it epitomises not only the strength our kids need to tackle any number of health setbacks, but also the parents who find they are mentally stronger than they ever thought possible.
We are so proud of George and how he copes with life. His brothers adore him and understand ‘Georgey can’t see very well’ so they have to help him and be patient. He has a very strong bond with his younger brother Zachary who loves to play songs that make him laugh.
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…