Amelia is a teenager who is affected by ankyloblepharon-ectodermal dysplasia-cleft lip and/or palate (AEC) syndrome. When she was born, she had toes that were connected and a few other signs that were different. She started turning blue at two hours and lived in the NICU for months. She was suffering from chonal atresia.

Maggie, her mom, talks about Amerlia’s early years and the challenges they faced when a typical week included six appointments for doctors and therapy.   In this interview, mom and daughter talk about her skin erosions, hearing implants, speech therapy and more.  Amelia opens up to talk about her feelings, how she handles AEC and her dreams for the future.

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