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Families unite for Luciana's Cause in Orange County
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Luciana Nicolosi. Photo provided by Nicolosi family.
Meet Luciana Francesca-Marie Nicolosi. The New Windsor, NY child is just 19 months old and is in a fight for her life.
Born to parents, Lorraine and Tom on December 28, 2007, Luciana was immediately diagnosed with an innocent heart murmur. It did not take long for red flags to be raised and tests to begin. Luciana has been diagnosed with a rare, and commonly fatal condition, Critical Pulmonary Arterial Branch Stenosis, (CPABS). Although Luciana's heart is working, her vessels carrying the oxygen-rich blood away from the heart, lungs and brain, are largely closed.
Similar to stenosis caused by clogged arteries that adults may have from cholesterol, an angioplasty was attempted on Luciana in July at Westchester Medical Center in Valhalla, NY. After seven and a half hours, the surgery was not a success.
Now, Lorraine and Tom are faced with agonizing decisions to make. A second type of angioplasty can be performed on Luciana, called a "Cutting Edge Angioplasty". This time the balloons would be armed with razors to slice through he narrowest vessels and clear them out for passage. The danger of the seldom done procedure is a resulting aneurysm that could be fatal for Luciana. Doctors warn the Nicolosi family that Luciana may be too young for this surgery to be a success for her.
West Chester Medical Center would not be an option as a facility that would perform this type of angioplasty. Lorraine says that the Center has declined because they are not properly equipped to perform the surgery. Nor, would they be prepared with proper staffing and necessary equipment, should there be complications.
Cornell, NY, has the capability of performing the surgery. However, they do not accept the Nicolosi's health insurance plan. The Nicolosi's were told that consultation and evaluation would start at $7,000. Further testing and the surgery would be additional. The next closest hospital would be in Boston, MA. Luciana's case and insurance plan is currently being reviewed by the hospital.
The alternative to the surgery is to wait. As Luciana grows, her condition will worsen. Without the oxygenated blood flowing to and from throughout her body, Luciana will become weaker, and even by the tender age of four or five, will eventually leave her incapacitated. Her body will eventually shut down and the only thing that would save her then is a heart and lung transplant.
Lorraine confides that it is not just the gravity of this life-depleting disease, it is also it's rarity that makes it difficult. Lorraine would find great comfort in finding another parent who has or is going through he same struggle. Lorraine is strong, though. She insists that there are still people who deal with situations that are of equal or worse circumstances. She refuses to spend her days crying. Instead, she reminds herself of her belief that, "God does not give me more than I can handle", and pushes forward for Luciana and her family.
In the meantime, with the help of friend, Beverly Booth, Tom, Lorraine, Luciana's sister, and brother, are hosting a Pasta Dinner on Luciana's second birthday . The dinner on December 28, 2009, will be at Cronomer Valley Fire Department, Newburgh, NY. All proceeds will go to Luciana's Cause to help offset medical costs, the family's travel, lodging and meals for these surgeries. You are encouraged to contact Lorraine Nicolosi if you have any information about CPABS or know of a support group related to it. Please contact Lorraine or Beverly Booth if you would like to make a donation or find out more information about the Pasta Dinner. Businesses are welcomed to donate goods and gift certificates to be raffled off, benefitting Luciana's Cause. A look at Lorraine's Facebook page shows you, in even a glance, how much prayer is offered for Luciana and her family. Lorraine is sure that prayer and faith bring strength and hope.
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