Meet Lehaylah

Born: 2014

Diagnosed: 2016

Lehaylah's Story: Lehaylah was born early, after only thirty-five weeks gestation. She was delivered through a C-Section and was undersized. Following her birth, she spent three weeks in the intensive care nursery. 

When she was three-months-old, Lehaylah was diagnosed with congenital heart disease. Lehaylah also suffered from hearing loss, delayed growth, had trouble meeting milestones and eating. Her pediatrician in Australia suspected that she had Cornelia de Lange Syndrome. Her geneticist proceeded to send her blood work to America, and three months later it was confirmed that her SMC1A gene is mutated which caused her to have Cornelia de Lange Syndrome. 

As a result of the disorder, Lehaylah lives with both physical and medical symptoms. Her physical characteristics affected by CdLS include connecting eyebrows, long eyelashes, a thin, downturned lip, and a high, arched palette. Her medical conditions include, but are not limited to, Gastroesphageal Reflux Disease (GERD), Obstructive Sleep Apnea, Mild Dysmorphic Features, and breathing difficulties. Lehaylah also has developmental, communication, intellectual, and behavioral delays.

Lehaylah did not roll over until she was five-months-old; she did a modified crawl at eleven-months; she sat on her own at fifteen-months; and she learned to crawl properly at nineteen-months.

Lehaylah's mother has been seeking to spread awareness

ever since she received the diagnosis. She had trouble finding awareness resources in Australia and has been utilizing America's resources as well as international resources. She has created a Facebook page to contribute to the community.