Meet Lupita

Lupita CdLS.jpg

Born: 2016

Diagnosed: 2018

Lupita's Story: Lupita was born in a village in Oaxaca, Mexico. Her birth parents were going to throw her in the garbage because she was "fragile and sickly." A man took her to his sister who could not have children, but she did not want Lupita either, so the man took her home. Lupita lived in severe poverty without real medical attention for two years. In May of 2018, the family learned of an orphanage.

When the orphanage visited Lupita, now two-years-old, she still looked like a newborn. Her hair was matted and her head bled from sores when bathed. She weighed only twelve pounds. The orphanage immediately took her in. A woman named Maria, from the orphanage sent photos of Lupita through Facebook to some of her friends. One of Maria's friends, who also owned an orphanage, recognized Lupita's characteristics because one of the young boys in her home had Cornelia de Lange Syndrome, and so she suggested that Maria look into the condition. After being seen by a geneticist, Lupita was officially diagnosed with CdLS. 

Lupita faces many challenges due to where she lives. Within five months of being taken in by Maria's orphanage, Lupita began gaining weight, was working on sitting up, and crawling. Lupita is now very happy. 

Lupita has some of the typical physical features of Cornelia de Lange Syndrome: connecting eyebrows, long eye lashes, thick hair, and cleft pallet. She struggles with projectile vomiting, which has brought her close to losing her life twice due to the inability to breathe. She also has a heart condition and shows self harm behaviors such as biting and head-banging. 

Maria's orphanage does not receive free medical clearance for any of Lupita's testing, so they do their best to care for her while awaiting approval for medical clearance. For now, she has found a loving home in her orphanage where she is monitored closely. 

Maria is very thankful for the internet in this case because it has lead her to discover resources and support she would not otherwise have access to.