Meet John

John is 5 years old. He is a very happy little boy. John was diagnosed with PHPV when he was 2 weeks old but was diagnosed with CTNNB1 when he was 3. He loves water…

Meet Eleni and Ileana

Eleni (21) and Ileana (7) are both affected by CTNNB1 syndrome. They have three sisters ages 19, 15 and 11 who are not affected. Eleni loves SpongeBob, music, watching signing time and videos on her…

Meet Preston

Preston is 12 years old and is in 6th grade, his first year of middle school! He attends a local public school in the special ed/life skills program, and is a part of his school’s…


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