Addie was diagnosed with CTNNB1 syndrome when she was 2 ½ she was the 21st patient diagnosed in the world. To date, there are just over 70 patients worldwide. This disorder causes her not to make a protein called beta-catenin, which is necessary for neurological development. The doctors tell us that Addie probably will not have an IQ above 70 and will be reliant on us for her entire life. Despite this, she tries her hardest at everything she does. Addie really started to excel at walking last spring, just after she turned 5. While she is not 100% stable all the time, she has come leaps and bounds. She still has a wheelchair for long trips and transit to and from school, because she is too wobbly to walk all the time, and will still resort to crawling. She has an iPad that she uses for communication, particularly at school, as she has her own “language” and many of her words are hard to understand. It can be frustrating for her and for us, but she really tries to communicate! She loves to sing and dance, especially to Moana songs. According to her, she is Moana. She also loves animals, Peppa Pig, coloring and more. She loves Oreos, root beer, M &Ms and stickers…she’ll do almost anything to get them! She is usually happy and upbeat, and loves to watch videos of her accomplishments! We are so proud of how far she has come in almost 6 years (she will be 6 on April 9), and are looking forward to seeing where she will go!
Submission – Crush Photography