Arianna's Angels

Sweet baby girl, Arianna Hernandez, was born on October 20, 2013 to her mom, Veronica. During her first few hours after birth, only mom became aware with what seemed to be Arianna choking and aspirating while sleeping. Unfortunately, this continued along with other unusual symptoms that began appearing over the next few months of her life. Mom consulted with multiple specialists due to the mounting concerns she had for her daughter. However, after each evaluation and several tests, every one of Arianna's symptoms was explained away as normal for a newborn. It wasn’t until she stopped gaining weight over too long of a period that doctors became alarmed with her lack of growth by the age of five months old.

Veronica having been both assertive and persistent with the medical professionals to uncover the cause of Arianna’s escalating issues prompted her daughter’s admission to Massachusetts General Hospital on April 3rd. While there, after two weeks of more extensive medical testing by numerous doctors from various specialties as well as a g-Tube being put in place, Arianna was given a diagnosis of Gaucher’s Disease Type 2. The illness is a very rare progressive genetic disorder which has an extremely brief life expectancy. You may read more about the disease on this website: https://www.counsyl.com/services/family-prep-screen/diseases/gaucher-disease/.

Shortly after receiving the devastating news, it became apparent that Arianna was also going to require a tracheostomy tube in order to breathe because of complications from her disease.

On May 21st, Arianna was transferred to a rehabilitation hospital in Connecticut in order to be closer to family before hopefully transitioning to yet another medical facility to possibly seek treatment for a stem cell transplant. However, everything has now been delayed due to Arianna being admitted to Yale-New Haven Children's Hospital with pneumonia on July 2nd. She has been on an oscillating ventilator and in a medically-induced coma to help her little body heal from the infection. Sadly, Veronica has not even been able to hold her daughter during this time as moving her fragile body attached to the special ventilator is inadvisable.

This has been a long and arduous journey for them both. Veronica has displayed such love, strength, courage and vigilance for her daughter's care. She works tirelessly every day to make sure Arianna's quality of life is the best it can be. And she has been proactive in her research of treatment options and persistent with medical staff to make sure Arianna receives them.

Unfortunately, to make an already difficult situation worse, the costs for Arianna's care are accumulating. She requires constant technological support and, as this is a rare disease, many of the treatments are new and/or experimental. Please consider becoming one of Arianna's angels so that we might be able to offer some amount of support and love to this amazing little family!