Luciana's Highway to hope
On December 28, 2007, Luciana Francesca-Marie Nicolosi was born with an extremely rare Heart Disease known as Critical Pulmonary Arterial Branch Stenosis (CPABS). While some children born with this disease may have only one or two stenoses or blockages, Luciana was born with dozens of these blockages, many of which are deep inside her lungs. If these obstructions aren't relieved, her blood doesn't receive enough oxygen, and high pressures are placed on her heart's right ventricle, potentially leading to heart failure and death. When the blockages occur in her major pulmonary arteries, they can be fixed surgically, but surgery cannot repair the smaller arteries that branch off inside her lungs without causing extensive lung damage. Even after surgery, these blockages will persist about 40 to 60 percent of the time. The only option becomes a Lung or Heart-Lung Transplant. Due to the damage already incurred, Luciana will ultimately need a Heart-Lung transplant.
In October 2013, Luciana underwent her 12th Heart procedure. The RV pressures on Luciana’s Heart caused her surgeon to prematurely terminate this procedure. Luciana’s Cardiologist will now closely monitor these pressures as further research is conducted.
Due to it’s rarity, there are only 7 Hospitals in the country involved in it’s clinical research: Children’s Hospital of Boston, University of California at San Francisco, Children's Hospital of Philadelphia, Stanford University Medical Center, The Cleveland Clinic, Miami Children's Hospital, and Duke Medical Center. Children’s Hospital of Boston is the closest to the family residence.
Two weeks after returning home from Boston, Luciana’s father was released from his place of employment. The family’s medical benefits have been discontinued and now the family could face foreclosure of their home and repossession of the vehicle used to transport Luciana to and from her medical appointments. Still, Luciana’s parents say their biggest concern is getting Luciana the medical treatment she needs to survive and be healthy.
Now more than ever, we need your help!
In October 2013, Luciana underwent her 12th Heart procedure. The RV pressures on Luciana’s Heart caused her surgeon to prematurely terminate this procedure. Luciana’s Cardiologist will now closely monitor these pressures as further research is conducted.
Due to it’s rarity, there are only 7 Hospitals in the country involved in it’s clinical research: Children’s Hospital of Boston, University of California at San Francisco, Children's Hospital of Philadelphia, Stanford University Medical Center, The Cleveland Clinic, Miami Children's Hospital, and Duke Medical Center. Children’s Hospital of Boston is the closest to the family residence.
Two weeks after returning home from Boston, Luciana’s father was released from his place of employment. The family’s medical benefits have been discontinued and now the family could face foreclosure of their home and repossession of the vehicle used to transport Luciana to and from her medical appointments. Still, Luciana’s parents say their biggest concern is getting Luciana the medical treatment she needs to survive and be healthy.
Now more than ever, we need your help!
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