Hello family and friends,

We are reaching out to ask for your support for The Family of Alora Eliana Quintana. 

At 20 weeks gestational age, the ultrasound technicians found Alora’s femurs measuring short during her anatomy scan. The parents Alex & Nidia Quintana were then referred to maternal-fetal medicine (MFM) specialist, who stated the baby has a form of “lethal” skeletal dysplasia. The parents decided to obtain a 2nd opinion with Children’s Hospital Los Angeles-USC, who also confirmed a form of “lethal” skeletal dysplasia as Alora’s extremities were measuring shorter, bowed, or fractured, she had a bell-shaped chest with several fractures, her heart was taking over 75% of her chest cavity resulting in small lung development.

 The parents were able to confirm with genetic testing that Alora has Osteogenesis Imperfecta (OI) aka brittle bone disease or “glass baby”. About 1 in 20,000 babies have this, and can either be genetic or “de novo” meaning a new mutation at conception (which happened in Alora’s case). These genes affect how the body makes collagen a protein that helps strengthen bones.

The MFM presumed Alora had a “lethal” form of OI due to her pulmonary hypoplasia. 

After confirming Alora’s diagnosis, her parents decided to continue with pregnancy and cherish all the time they have with Alora regardless of the MFM presuming her diagnosis “lethal”. 

Her parents connected with other OI moms who have been thru similar situation and their babies were thriving. 

Additionally, her  parents consulted with OI medical specialists at Nemours Children’s Hospital Delaware to ensure the best treatment plan for Alora’s condition once transferred to CHLA. 

Nemours Children’s Hospital has tried to move away from the term “lethal” and “type II”, recognizing that it was used during a time with less available medical technology than we have today. They recognize that there are infants with OI who do not survive, due to any number of factors including family care goals, but for many infants who would previously been characterized as type II born to families who would like to pursue life-sustaining interventions, survival is very possible. Prenatal prognostication is very challenging and it is not possible to predict where along a spectrum an infant may land (i.e. if the infant will be moderately or severely affected).

Alora’s parents leaned on god during this tribulation and held on to hope for a miracle.

Alora was born on June 20, 2024 via c-section and immediately transferred to Children’s Hospital Los Angeles for treatment. 

On July 8,2024  sadly, Alora passed away at just 18 days old due to a pulmonary hemorrhage. 

Her family is now facing medical bills and expenses related to her funeral service.

We humbly ask for your support during this difficult time. Any contribution no matter how small, will help us cover the cost of the funeral and provide a proper service for our little angel. 

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