Tommy and Ashley Palmisano were excited to welcome a second child into their family last summer. After an uncomplicated pregnancy and delivery, the Ewing couple were thrilled to meet their son, whom they called Gianluca (Luca).
Within a couple of hours, however, his mother suspected that something was amiss. “We were under the impression that we were having a healthy little boy. He was born in seven minutes. He seemed fine. Two hours after he was born, he turned a bluish purple color,” Ashley said.
It turned out that Luca was not fine. About six weeks after he was born, the Palmisanos found out that their baby was suffering from a fatal lung disease called Alveolar Capillary Dysplasia—one that often kills within days of birth—and that only a transplant could save his life. After several harrowing months spent working keeping Luca alive, a successful transplant surgery was performed in November.
Now, in addition to continuing health issues associated with Luca’s condition, the family is also faced with paying for mounting medical bills. There’s the costs of co-pays and deductibles. There’s also the likelihood that the boy will need another lung transplant sometime in the future. They are now reaching out to the community for help.
“Our community has been absolutely amazing. It was hard to keep up with the number of people who reached out who were concerned about Luca. It is extraordinary how the community can come together to help a family,” said Ashley.
The family has partnered with the Children’s Organ Transplant Association to continue to raise the funds necessary for Luca’s continued care. COTA helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
The organization does not charge for its services, and 100 percent of the funds raised in honor of patients are available for transplant-related expenses. COTA funds are available for a patient’s lifetime for almost any transplant-related expense.
Ashley, 29, and Tommy, 35, couldn’t have expected anything like this when she gave birth to Luca at the University Medical Center of Princeton at Plainsboro, where she also works as a nurse.
Almost immediately after he was born, Luca was placed in the Neonatal Intensive Care Unit at the hospital, while doctors tried to determine the cause of his respiratory distress. Two days later, he was transferred to the Children’s Hospital of Philadelphia for further evaluation and treatment of an issue with his colon.
“It took a couple a weeks to get him cleared for surgery, and he did surprising well. But he continued to have nasal flaring and increasing pulmonary hypertension and respiratory distress,” Ashley said.
Ashley said that doctors decided to test for ACD to rule that out as a possibility, but to everyone’s dismay, the test was positive.
ACD is a rare congenital disorder — only about one in 100,000 infants are born with ACD. The condition affects the development of the lungs and their blood vessels by impeding the exchange of oxygen and carbon dioxide. The disorder results in infant fatality in almost every occurrence, and a lung transplant is the only hope for babies who do survive.
As a nurse, Ashley said that she was familiar with the condition, and knew that most babies passed away within their first month of life. Luca was six weeks old when they learned he had the fatal disease, so at the time of his diagnosis, he was already defying odds.
Twice while undergoing medical procedures, Luca had to be resuscitated. In the process of doing the chest compressions, medical staff broke every rib in his chest while bringing him back to life. He had to be put into a medically induced coma to heal.
Ashley said that she and her husband had some difficult conversations with their families as they decided what the next step should be for Luca. They worried that they might have to begin planning a funeral.
“The entire time he proved that he was not ready to leave this family. He would wake up and try to rip out the tubes in his mouth. It was really hard to give up on someone who hadn’t given up on himself yet,” Ashley said.
The family and medical team caring for Luca, decided to place him on a transplant list. It was a difficult decision for the doctors caring for him. Luca wasn’t gaining weight because he was burning so many calories just trying to breathe.
“They weren’t sure if they wanted to transplant a child who was so nutritionally deprived,” said Ashley.
Once on the transplant list, the chances of finding a donor for Luca were slim. Lungs are fragile and cannot be transported a long distance, and infants Luca’s age have an even more difficult time matching due to a scarcity of donors. The family had braced themselves for the possibility that Luca might not find a donor in time.
After Luca was added to the transplant list, his paternal grandparents, Thomas and Patti Palmisano, took a planned trip to Rome. The couple said that they are devout Roman Catholics, and that Luca was baptized while he was in the hospital.
While in Rome, Thomas and Patti visited the Vatican several times, with the intent of asking a priest to pray for Luca, but each time they were unable to find one. They decided to try one last time before they had to leave, and they were fortunate enough to run into someone they believed was a priest. It turned out the person they approached was actually a bishop. He prayed for Luca with his grandparents, and then said that he would hold a Mass for Luca.
Soon after his grandparents returned to the States, everything fell into place. Donor lungs became available for Luca, and his transplant surgery was a success.
A week after surgery, Luca was thriving. He began gaining weight for the first time and advancing toward missed developmental milestones. Luca is making up for lost time in leaps and bounds. He has already learned to roll over, continuing his lifelong pattern of exceeding expectations.
“He spent all of his calories trying to breathe,” Ashley said. “He was so skinny. It was horrifying. Now he is on the growth chart. He’s a little chunker. It’s such a good feeling to have that,” Ashley said.
Ashley said that their family is grateful for the time that they have with Luca. Every moment is a treasured memory that they were not supposed to have. They cherish the every experience, like Luca learning to roll over or splashing in a pool for the first time.
“He truly is a miracle baby,” Patti said.
‘We don’t know how long we’ll have these lungs. We are very thankful for everyday that we have.’
Tommy and Ashley are getting through the situation with help from their families. Luca’s three-year-old older sister, Ariana, has been very supportive in helping with little tasks, like bringing her mother diapers when it’s time for Luca to be changed.
“She is extremely affectionate towards Luca,” said Thomas, Sr. “She is always hugging and kissing him.” Ariana has even referred to Luca as “her son.”
Thomas Sr. and Patricia act as public relations coordinators for the fundraising effort. Ashley’s sister, Corrine Edling, is committee coordinator, and her sister, Carli Edling, is webmaster for Luca’s website.
Meanwhile, several events to raise are in the plannign stages for upcoming months, and donations have already helped the family cover the costs associated with Luca’s medical expenses.
“Transplants are expensive. People think that because he got the transplant that he is okay now. That is not necessarily true. Longevity is rather poor for lung transplants. His lungs will eventually reject. We don’t know how long we’ll have these lungs. We are very thankful for everyday that we have,” Ashley said.
Ashley has returned to her job part time as an RN to retain the medical insurance that offsets the cost of the Luca’s medications, follow-ups, and therapies. Tommy works as a senior account executive for The Judge Group in Wayne, Pennsylvania.
Despite having insurance, the couple is confronted with the high cost of the deductibles and co-pays.
“Luca is on immunosuppressants for life. He takes 10 medications in the morning and five in the evening. They are very expensive. Some of his medications cost $500 a bottle. He has to go to follow-ups. He has to be intubated to check for rejection. It’s not easy. We literally traded one disease for another, and that is long term rejection,” Ashley said.
With faith, family, and community by his side, Luca has already won numerous battles, and with continued support, his family is hopeful he’ll conquer the challenges that remain ahead.
“We kept fighting for him, and now he is fighting for himself. He has a superman figurine. We thought it was fitting,” said Ashley
For more information or to make a donation, visit Luca’s COTA page online at cotaforteamlucap.com.