Meet Devon

Born: 1977

Diagnosed: 1977

Devon's Story: Devon was diagnosed with Cornelia de Lange Syndrome only a few days after being born. She was born with numerous medical conditions, including a congenital heart defect: in her case, two holes in her heart. The holes luckily closed on their own without surgery. For her first year, she was treated with digitalis. Due to her cleft palette, she did not demonstrate the sucking instinct, so she had to be gavage fed for a year. Devon also had many gastro and bowel issues.

Devon was born deaf, but was able to learn some sign language. At the age of two-and-a-half, Devon attended school two-to-three days per week. At school, she received Occupational, Physical, and Speech Therapy. When she was six-years-old, she learned to 

walk. Physically, Devon was short in stature, with short limbs, and with excess skin on her neck. Like many with CdLS, Devon had a thick head of hair and distinctive eyebrows.

Devon lived with her mom at home. She passed away in 1997 at the young age of nineteen due to bronchial pneumonia. Devon was a very sweet girl, and despite her communication challenges, she always kne exactly what she wanted.