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Meet Lucy! She is one year old and lives in Lakeville, MN. She received her Ctnnb1 diagnosis at just 4 months. Lucy was born with multiple heart defects but luckily her heart has been healing itself and no intervention has been needed so far. Lucy was also born with a detached retina due to FEVR so she is blind in one eye. She has had laser treatment to protect the sight of her other eye. Lucy has had a lot of PT and loves to crawl and pull up on her knees. She loves anything with buttons to push, she loves eating anything we feed her, and she especially loves her big sister, Nora. She is working on signing “more” and has started to practice using a gait trainer. She goes to daycare part time and has a lot of interest in the other kids, as they do for her. For Lucy’s first birthday, over $100,000 was raised for gene therapy research! She has come so far and we hope and pray there is so much more to come! The name Lucy means “bringer of light.” Keep shining bright, little one!

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