WEST ORANGE, NJ — Luciano and Noah are 3-year-old twins who were born with significantly low platelet counts. While doctors raced to determine the cause, in the first few months of their lives, the brothers from West Orange endured multiple transfusions to fight the likelihood of either of the infants bleeding out.
“For three months, we didn’t know what it was,” their mother Edna said.
Luciano and Noah were eventually diagnosed with a rare genetic disorder known as Wiskott Aldrich syndrome. The diagnosis led both children to receive bone marrow transplants and face additional health challenges, including daily medications, chemotherapy and G-tubes for feeding.
“Luciano got very sick and we had to increase his IV steroids due to his illness,” Edna said. “It weakened his muscles to a point where he could no longer walk on his own.”
While the brothers were in treatment at Hackensack University Medical Center, one of their social workers introduced the family to Make-A-Wish New Jersey, whose mission is to create life-changing wishes for children with critical illnesses.
Both brothers’ individual wishes were granted. For Luciano, the wish would come in the form of a playset in their family’s backyard. For Noah, it was a trip to the Walt Disney World Resort.
“Luciano was having a harder time than Noah,” Edna shared. “He was immune-compromised, and so he could not visit public playgrounds for fear of germs from other kids. It was really difficult."
After the playset arrived, the boys had an outlet to have fun.
“It was the first time in a long time I felt like I saw my two children being normal siblings again,” Edna said. “Noah also encourages Luciano. He helps him. Seeing them smile, play, have fun…and we have this for them to share forever.”
A few months later, Noah’s wish to go to Walt Disney World in Florida would be granted, which would serve as a weeklong respite for not only Noah, but the entire family.
“Every day on our trip, we had somewhere exciting to go, or something exciting to do,” Edna continued. “Just watching them have fun and be kids again was so special.”
Luciano made strides while on his brother’s wish trip, too. Edna credits Luciano’s growing courage to the memories created on their trip to Walt Disney World.
“Luciano had a hard time with water ever since his port was put in,” Edna said. “He was afraid to enter any type of water. But during our trip, he went right into the pools with no problem! He seemed motivated to try new things.”
Almost a year after it was delivered, Luciano and Noah continue to find a sense of energy and joy as they explore the playset together. Luciano’s wish for a playset has become even more significant right now, as the family like many others, find themselves navigating the COVID-19 pandemic. With both boys battling immune deficiencies, the family must remain extra vigilant and remain at home as often as possible, for fear of contracting any type of illness.
“We try not to go out other than to the clinic, which is now monthly,” Edna said. “It has always been hard for us with other viruses, and now it’s even harder. It’s scary, we don’t know who or what’s been infected, the mail, the food from the supermarket. There is no vaccine, and Luciano is unable to get vaccines. My mother works at a supermarket and when she comes home, the boys want to go downstairs to see her, but they can’t.”
The playset has provided a sense of normalcy for the kids.
“Watching them enjoy the playset together is incredible,” Edna said. “They love the tunnel. And Luciano is doing great. He’s crawling now, he is much stronger, climbing on his own, going down the slide. He has lost much of his sense of fear. He’s trying new things – he sees Noah doing more and more, and he wants to follow him. He’s eating more on his own, too.
“We cannot take our kids out and expose them to new things,” Edna continued, “but what Make-A-Wish says is true. Wishes are life-changing! This playset has been life-changing.”
Make-A-Wish New Jersey has granted more than 11,000 wishes since its inception in 1983. For more information about Make-A-Wish New Jersey, visit nj.wish.org.